Posted Nov 24, 2021 by Marne Stollenwerk
During this week of Thanksgiving, we celebrate our many blessings including praying friends and answered prayers. I am happy to report Emily's PET scan revealed a small area that the oncologist believes is inflammation and not "active disease". Hallelujah! Please pray for complete and PERMANENT healing. We are also celebrating minimal side effects with this round. All good news!
Emily has two rounds to go. She will be heading back to Jax on 12/7 for round five. She has updated her blog so you can check that out at www.emilygoodenow.com and you can find her on Facebook as well.
Thank you for your prayers and support and may God bless your Thanksgiving Day.
Posted Nov 14, 2021 by Marne Stollenwerk
Here is a quick catch up and prayer requests for the upcoming week. Hannah, Emily's sister, had a bout with the flu but we are praising God that no one else got sick and that she is feeling much better. God continues to be Protector and Shield!
Now, due to the Thanksgiving holiday, Emily will return to Jax on Monday to prepare for round four of chemo on Tuesday at 10:30. This is a full week early which didn't allow much time for mental preparation. Dina has asked for us to pray against "scanxiety" because Monday at noon they will be performing a PET scan to see if there has been more shrinkage of the mass. Pray complete remission, no disease, and total peace of mind! We've already seen significant improvement, praise God, and total remission would be the greatest gift!
Also, please pray for insurance assurance. The insurance company has deemed all of the initial care in PA "out of network" so the bills are six figures and daunting. I recall the miraculous way God revealed the tumor while they were on vacation, the timing that allowed them to avoid overcrowded hospitals and unavailable facilities in Florida, and now the ongoing treatment that is the result of all that was revealed in PA. Please join me in praying that the insurance company will choose to cover the costs that are out of network and for PEACE of mind for Tom and Dina.
Round four marks the downhill journey to total healing. After this there are only two more to go. Thank you for your steadfastness in prayer and support. Emily is still working on her blog so you will hear from her soon.
Thank you for praying. God Bless!
Posted Nov 3, 2021 by Marne Stollenwerk
Emily finished chemo round three last night and will be heading home this morning. Praise God! She is halfway done with chemo! She struggles with no appetite and fluid levels seem to drop which causes low BP, dizziness and fainting. She is also quite anemic and had to have a blood transfusion to help correct iron levels. Prayer for those issues is appreciated. Thank you for your constant prayer, interest and support. I know these trips, and everything they involve, can be exhausting, wearying, and challenging. Thanks to your prayers, Emily and Dina are steadfast, encouraged and supported in every trip to Jax/Mayo. Your prayers make all the difference! Thank you♥️
Posted Oct 26, 2021 by Marne Stollenwerk
Emily will be heading back to Jax for chemo round three tomorrow morning. Please pray that the
Central line placement on Thursday at 11 am would go well with little to no pain; guidance for the docs as they prescribe dosaging and that Emily will feel ok during and following treatment (no passing out-maintain weight & hydration) and it will be an uneventful hospitalization! Thank you for your faithfulness in prayer. God stays in our midst.
Posted Oct 18, 2021 by Marne Stollenwerk
Emily went for routine oncology visit today. She is nauseated and dizzy so she's getting fluids now. She had some tingling in her legs today, but pain is controlled with Tylenol so far. She came off steroids from the weekend and it's wreaking havok on emotions! She also has a poor appetite. These symptoms are a bit better than the days following her first chemo session, but prayers are truly appreciated.
Round two complete
Posted Oct 15, 2021 by Marne Stollenwerk
Praise God, chemo round two is over and Emily is home. Today, she received a Neulasta injection to boost her white blood cells. This is the injection that caused so much pain after the first round of chemo. Please pray that the dosage adjustments will prevent painful side effects this time. Overall, chemotherapy went well. Every round is a step closer to healing and the next round is scheduled for 10/27. God's hand is evident in the journey and Emily is working on a blog to help encourage others who may be facing health hardships. We will let you know when it goes live. Thank you for your continuous prayer and support. The results are obvious!
Something to Celebrate
Posted Oct 11, 2021 by Marne Stollenwerk
Praising God this morning as the scan taken yesterday, to rule out pulmonary embolism, reveals a significantly smaller tumor! Dina said it looks about 1/5 the size of the original mass. In addition, one of the airways has opened back up. This is wonderful miraculous news! Thank you for praying and believing with us. In Christ there is hope and we are hoping Emily's healing will come well before the six months of anticipated chemo. Please continue to pray. This is great news, but it isn't over. God bless!
Here we go again
Posted Oct 9, 2021 by Marne Stollenwerk
Good morning, friends of Emily. As you can see from the new picture, Emily is hunkered down for chemo and some Gator football. Her physician noticed she was "catching her breath" so he has ordered a CTA to rule out a pulmonary embolism. Please pray that there is no issue, that she will have an uneventful experience with this round of chemo, that she will tolerate all of the medications well, and that the oncologists will see a reduction in the tumor. Thank you for your continued prayer and support. There is a long road ahead and I know the family is grateful to everyone who continues to walk this journey with them. You are appreciated!!
Posted Oct 7, 2021 by Marne Stollenwerk
Good morning praying friends,
Emily arrived at Mayo early this morning. They are processing her...bloodwork, Covid test, etc... Chemo is scheduled at 12:15 tomorrow. Please continue to pray for healing and tolerance to the treatment. Thank you for your thoughts and prayers.
Surgery Tomorrow; Cycle 2 on Friday!
Posted Oct 3, 2021 by Dina Goodenow
I just wanted to provide an update for you since Emily is getting ready to gear up for Cycle 2.
Emily started to lose her hair shortly after finishing Cycle 1. This has been a huge adjustment for her; but, she took control of the situation by having her head shaved! She has been sporting some pretty cute headbands lately! Emily also decided to get a wig to use at will. We think she looks lovely with or without the wig! :)
As some of you may know, chemotherapy may cause infertility, so because her physicians could not guarantee her treatment would not cause future issues, Emily chose to undergo fertility preservation. She will have the egg retrieval procedure tomorrow at 9:15 am in outpatient surgery. We have been told it may take a few days to recover.
Emily is scheduled to go to Jacksonville this Thursday to prep for her hospitalization. She will start the 24/7 chemotherapy on Friday and finish up by the following Tuesday or Wednesday.
We are hoping the doctors will make the necessary adjustments to avoid any side effects!
Thank you again for keeping us in your prayers and for your generous support. We feel loved! :) Dina
Posted Sep 26, 2021 by Emily Goodenow
Hi all! It's Emily here :) I just wanted to say thank you to everyone for the prayers and support. It really means so much to me. As difficult as this situation has been, knowing that I have an army of people lifting me in prayer has been such an encouragement and makes every day a little easier. I love you all!
Praise and Plodding
Posted Sep 20, 2021 by Marne Stollenwerk
Praise and plodding. That is how I would describe the last few days. Your prayers are being answered so I'll start with the praises... #1 Emily's white blood cell count continues to go up which is a desired outcome of the medication that caused so much excruciating pain. #2 Her pain is under control and Dina has determined the dosage of pain medicine that keeps the pain tolerable so with the next round of chemo they should be able to stay ahead of it. #3 A $5000 medicine, needed to address fertility issues arising as a side effect of the chemo, is being covered by a charitable foundation. Praise God! Thank you for continued prayer support.
Now the plodding... Emily gets very tired very easily. Her hair has started to fall out which isn't a surprise BUT that it's happening after only one round of chemo is a surprise. Her appetite is still diminished so she is losing weight. Lastly, she is supposed to return to Mayo in a couple of weeks for chemo round two which is hard to embrace given the recent hardships of round one. Thankfully, they have met wonderful Christian providers throughout this journey. Even in the dark days, God's handiwork is evident. Thank you for praying!
Slow and Steady
Posted Sep 17, 2021 by Marne Stollenwerk
Following a painful two days, Emily is more comfortable. She still has pain in her low back but has gotten a little sleep and head requested food. So, PRAISE. In addition, her white blood cell count is rising which is a good thing! Grateful for the little blessings that keep a flicker of hope enduring. Thank you for continued prayers. Dina said their biggest need continues to be good sleep and pain management.
Posted Sep 16, 2021 by Marne Stollenwerk
Please continue to pray for pain management. Dina said they had about 20 straight hours of living hell. Pain meds were tripled (doc approved) before pain was tolerable. As you can imagine, they are exhausted. The medication causing this pain is taken post chemo so this is not a one and done scenario. Please continue to pray for relief and rest.
Posted Sep 14, 2021 by Marne Stollenwerk
Thank you for your prayers. They've ruled out blood clots. Emily is home on "good pain meds". The pain is related to one of the therapeutic shots she is taking. We are so thankful it isn't more serious. Please continue to pray for good pain management.
Back to the ER
Posted Sep 14, 2021 by Marne Stollenwerk
Please pray. Emily is experiencing severe leg and abdominal pain so they have been instructed to go back to the ER. We are hoping this isn't a blood clot or other serious issue. Please pray for Emily and the family.
Headed home again
Posted Sep 10, 2021 by Marne Stollenwerk
Emily has been discharged and is headed home for much needed rest. They had a whirlwind stay full of tests, noisy construction at the hospital, and a sleepless night, but PRAISE the Lord, no serious cause for the low blood pressure. It seems to be a side effect of one of her meds. Thanking God for that answer!
Hopefully, today will be the beginning of rest and healing so her body is ready for the next round of chemo in a couple of weeks.
Thank you for your continued prayers and support. I know Emily would appreciate cards if you'd like to mail them to the house. Due to risk of Covid exposure in her immunocompromised state, personal visits are discouraged but please know the family is grateful for everything being done to support them.
Posted Sep 9, 2021 by Marne Stollenwerk
Thank you for praying it's through these unexpected challenges! Emily is tuckered out, but it seems like all the tests are coming back negative. No pulmonary embolism, ultrasound of heart is ok, inflammatory markers are ok, blood cultures take awhile, but if positive they usually see elevated lactic acid and that is normal. They met her admitting internist, Dr Ray "like ray of sunshine", and she was. The doctor said she received one of the same type drugs that Emily is taking and her BP dropped. Emily tends to be on low side with BP and has episodes of orthostatic hypotension even before treatment…so Dr will keep her overnight for observation, monitor heart, do an echo, give her fluids/potassium & magnesium b/c they are on low side as well. Plan on discharge in morning if no other issues.
She ate a whole grilled cheese sandwich!!! Woo hoo! Bp is up to 109/47 resting -still low but better than 75/55!!!!
Dina is asking for answers, solutions, sleep, and renewed strength. She said Emily was really discouraged today and fatigue is a big part of that. Thank you for your love and support.
Orlando hospital admission
Posted Sep 9, 2021 by Marne Stollenwerk
Emily will be admitted. They don’t know the cause of low bp- BP didn’t even register on Fire dept bp cuff. They were able to get a radial Pulse (Checked wrist pulse). She passed out in hallway at ER she says due to BP! Effusion around heart is stable-not causing issues-has small pleural effusion (fluid around lung-small)…checking for sepsis/infection, and vascular auto immune issues.
Plan on rechecking heart with more detailed test to be sure fluid not pressing on heart (“tamponad”), drawing blood and urine for cultures to be sure no infection, also checking for blood clot in lungs as more common with lymphoma.
Posted Sep 9, 2021 by Marne Stollenwerk
Please pray! After a safe return to Orlando, Emily is being taken to the ER for symptoms of low blood pressure... lightheadedness, fainting.
Plans for Home
Posted Sep 7, 2021 by Marne Stollenwerk
Thank you for your continued prayers and interests in supporting the Goodenow family. Emily is in her last hours of chemo round #1. Overall, she has handled it well, although she has lost her appetite. She is trying to eat, realizing the importance to her recovery, but it is difficult. There was also a small issue with her fluid levels. It seems the pharmacists are generous with fluid in the cocktail so she had 7 lbs of excess fluid build up. Nothing a little lasix couldn't handle. The doctor said they will move forward with plans to discharge her tomorrow, will remove her PICC line in the morning following chemo, and they will head back to Orlando as soon as she is cleared. There is some concern regarding the impact chemo will have on fertility, so studies will continue once they return home. Please pray for a consistent message in that regard. Dina said they are seeing the nursing shortage first hand (nurses leaving due to burnout and better pay elsewhere), however, they have received excellent attentive care. Overall, PRAISE PRAISE PRAISE! Treatment is going as planned and her response has been good so far. The next round of chemo will likely be the end of Sept. or beginning of Oct.
I forgot to mention: Emily decided she was not going to drop the two virtual classes she is taking at UF. She has worked out a plan with her professors to allow flexibility with due dates and projects. I was so glad to hear this because I know it is nice to have something to focus on, something to make you feel like you are moving forward, a goal in mind.
So, if all goes well, she will be home on Wednesday. Feel free to send cards, contact them through their email address on the MealTrain page, and share the MealTrain page with people you know who will pray for them.
Kickin' cancer to the curb!
Posted Sep 3, 2021 by Marne Stollenwerk
Thank you for your continued prayers and generosity! Emily has begun round one of chemotherapy so there is a bit of consistency for the next few days. The first round should last five days and they are hopeful to head back to Orlando on Wednesday. We are believing NO complications!
Huge praise for a family friend who has arranged deeply discounted hotel accommodations for Dina while Emily is in treatment, and each time she returns! While Dina can sleep in Emily's room at Mayo, she doesn't have shower access etc., so this is a wonderful and unexpected blessing. Same family friend delivered food to them tonight. Your generosity provides tangible and practical help in the day to day. Thank you ALL!
I know Emily, Dina, Tom and Hannah are so grateful for your support and prayers. It seems they can take a deep breath for now. I will keep you posted if there are any changes this weekend but let's hope for no updates until she is discharged next week! No news is good news! Have a blessed weekend.
A little good news...
Posted Sep 2, 2021 by Marne Stollenwerk
At 7:30 this morning, Emily had a PICC line inserted followed by a thoracentesis to drain fluid from her lungs. They were able to remove one liter of fluid which should help with breathing, however, Emily said she can't tell because it hurts too bad from the procedure! 🙂
There is a little GOOD NEWS: The RN says she hears much better air flow. ALSO, the ECHO, MRI, and PET scans are all clear, showing no signs of metastasis! We are praising God for this news! They have started an immune drug - she'll be sleepy - and around 9 pm tonight they will start chemotherapy. It's time to kick this cancer to the curb!
Thank you for continued prayers!
Posted Sep 1, 2021 by Marne Stollenwerk
Hello Praying Friends,
It seems like the progress for Emily is three steps forward two steps back. After their visit to Mayo Clinic, it was decided that chemo should begin as soon as possible. The primary reasons are type and size of the tumor. I had indicated in an earlier communication that the size was approximately 15x7 cm and Dina confirmed that the measurement is 13x5x2 cm, so it is large and dense. The mayo oncologist suggested that Emily check-in to the clinic today and remain in the cancer center for the duration of the initial treatment which means she will be there for five consecutive days. Chemo will be given non-stop via central line during that time. I am not sure what the schedule will be after the five days are up, but it was suggested that there are 1-2 week intervals where she may be able to come home between treatments. Because the chemo treatments will last approximately six months, Dina is still hoping they will be able to perform treatment at home and avoid the long stays in Jacksonville, the travel back and forth, isolation from family and friends, etc.
Unlike PA, FL hospitals only allow one person to be in the room with the patient and there are no substitutions. Tom nor Hannah will be able to visit Emily while she is in the cancer center. In addition, the oncologist suggested that Emily withdraw from her courses at UF for this semester. Dina said Emily was really devastated as she withdrew. I'm sure she feels the weight of these decisions and the battle ahead. On the upside, the oncologist felt strongly that the chemo will not have a negative impact on Emily's ability to have children in the future and his encouragement lightened that particular burden.
Please continue to pray for Emily. She is struggling with the lifechanging impact of this cancer. She told me she will do whatever she needs to do to get well, but I know she is struggling with losing her hair, not being at college with her friends, missing opportunities she had planned this semester, not graduating when expected, and a very long list of "what ifs".
Knowing the family expenses will increase due to travel (including gas, food, hotel) and prescription meds she will need between chemo visits, I have increased the donation amount. I have also added the home address if you would like to send cards for Emily to open when she gets home. Please forward the Meal Train link to praying people you know. Thank you for praying as God leads you.
Brief Tuesday Update
Posted Aug 31, 2021 by Marne Stollenwerk
Hello Friends, family,
I wanted to give you a brief update following the Goodenows return home. Yesterday, was the first of three appointments with specialists in Florida. The Moffitt Cancer Center in Tampa did confirm the results from NIH that show Emily has Primary Mediastinal B-cell Lymphoma. This is not the best case scenario, BUT with aggressive treatment it is curable! Emily and Dina both said they feel a level of comfort and peace in what they learned, the road ahead, and the cancer center itself. The therapy consists of chemo for up to six months and an option to receive the treatments at home.
Each day continues to be pleasure with pain, as Dina has said a couple of times. I was able to join them for their trip to Tampa and got to squeeze in a visit with my daughter, Ann, at USF. We enjoyed time with Hannah while Dina and Emily attended their appointment. Afterwards, we all went to dinner and then to Cookie Munchers and ate cookies the size of our faces. I was going to post a new picture but we realized we only took pictures of the cookies! This may reveal something about our little group...
Today, Tom, Emily, and Dina are in Jacksonville at Mayo Clinic. PRAY for a consistent message regarding the pathway to a cure! They do not need a conflicting treatment plan or any confusion with the path forward. The hope is that this appointment will serve as confirmation to the best treatment toward a cure.
Tomorrow (Wednesday), they have their last appointment with an oncologist in Winter Park. He would coordinate care with MD Anderson and the visit should finalize their options going forward.
PRAYER REQUESTS: Consistency in the suggested plan of care, total healing, continued peace in the journey. Also, pray for Hannah as she starts her college classes today. I can imagine difficulty focusing on curriculum. Lastly, please pray for God's continued favor in the process, including financial protection and provision. I know the family is grateful for your prayers and believe the accessibility to appointments, results, plans, etc. are ALL because of the prayers you have prayed on their behalf.
I will post an update on Wednesday afternoon or Thursday morning when their decision is finalized. It is hard to plan a meal schedule or ask for help when we don't yet know what will be needed. We do know, short of a miracle, it will be a long road ahead and they will need support. I can tell you, the family has a noticeable peace underlying each blow. They are not wasting time on "why" but, naturally, there are moments of anxiety. I see each of them dealing with what is right in front of them, one day at a time, with grace and assurance.
If you know someone who is a praying believer, you may share this page with them. You should be able to see the website under Emily's picture on the homepage. Please do not post to public social media sites. If you have any problems or questions, you can email me or Dina and our email addresses are also on the homepage. Thank you for your support.
Posted Aug 26, 2021 by Marne Stollenwerk
Thank you for your ongoing prayers and support for Emily and the Goodenow family. As I type this update, they are on their way back to Florida, home, and several unknowns. They will make a couple of stops but should be back in their home on Saturday.
In case you have missed a recent email update, here is what we know: Emily had two biopsies this week which have not provided conclusive results. The samples were good and have been sent for further scrutiny and to the NIH. The oncologist in PA believes the tumor is a type of B-cell lymphoma. Initially, he thought Hodgkin's, however, after reviewing the initial biopsy, they are now leaning toward primary mediastinal B-cell lymphoma. This would be a more aggressive form of cancer and could require up to six months of chemo for successful treatment.
Before leaving PA, Dina was able to secure upcoming appointments at Moffitt in Tampa (Monday) and Mayo Clinic in Jacksonville (Tuesday). They are waiting to hear back from Shands. They are awaiting an appointment with an oncologist in Winter Park who can coordinate care locally but this doesn't guarantee treatment will be local.
Dina has told me how thankful she is to everyone who is supporting, praying, and loving on them. There are so many unknowns in the immediate future and a seemingly endless list of prayer needs. Emily has cut back on her college course load, dropping back to two virtual courses, hoping she can incorporate them into a manageable treatment schedule while moving toward graduation. It is unfortunate that she lost a scholarship secondary to the reduced course load. Please pray for favor from Bright Futures so she can maintain her funding from them, a well-deserved full ride.
Immediate prayer needs: PEACE IN WAITING for a confirmed diagnosis and treatment plan, as well as, a call back from the Winter Park oncologist. PROVISION for upcoming unknown unexpected expenses. STRENGTH in the emotional process. I know that the Goodenows are believers who draw their strength from faith in Jesus Christ. Dina told me they are scared but not fearful, and I detect the underlying inexplicable peace that comes to believers in her communication with me. Nevertheless, the battlefield of the mind is wearisome and this is HARD! I find myself reciting 2 Timothy 1:7 and Ephesians 6:12 over them, her, us. Thank you for praying and believing and supporting them.
From this point forward, I will be posting updates from the Meal Train page. Please share the link with praying people. If you have any difficulty with the Meal Train page, email me from the link on the homepage (look for Organizer Marne Stollenwerk in the bottom left corner) and I will help. Please be patient as we get the kinks worked out of the communications cog. We want to provide updates to folks who are interested in supporting the family through prayer and practical needs, while preventing anyone from being overwhelmed with emails, including the Goodenow family :o).