Update – June 26th, 2013

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I had the chance to catch up with Seth and Chelsea for a bit and wanted to give an update on Jubie currently.

So far the worsening of her symptoms, whether due to the necrosis or any tumor growth, seems to have stopped, which is great! Praise God! As of now Jubilee cannot walk as her balance is very poor and she has a lack of control over her movements, and she has had trouble with here eyes and she often must crawl from one place to the next. But her attitude is cheerful and happy and she is full of energy as well!

Todd and Nadine bought her a tricycle which, since it does not require balancing, has enabled her to be very mobile and aid in exercising to fight the affects of the steroids, and she loves to zoom around and ride it all over. She can’t walk but she certainly can ride, so it has been immensely helpful!

They are continuing to seek God as to what possible options there are in the realm of treatments. Currently they are driving to nearby Farmington to meet with a lovely Christian woman who is a reflexologist. The foot zoning reflexology treats the nerve endings in the body and the visits have had good results. Her eyes are looking better and they are only a 2 treatments into the course of 7 visits, so Lord willing it will be very helpful. I will update as soon as I know or hear more.

They also said that the community of friends and family has continued to be such a huge blessing and help to them and they are so thankful for your ongoing prayers. Many of their friends in Paonia have been dropping by to pray for Jubie as well which has been a very encouraging blessing as well.

One thing that could really use prayer as well is that Seth, Chelsea and Isaac all have been struggling with very severe allergies/hayfever which alone can impede daily life, not to mention coupled with the current situation. Please pray that the Lord would provide relief for them!

They are continuing to take each day at a time, starting every morning with taking communion together and committing their day ahead to Jesus. Seth said that God has been teaching them to enjoy each day and not to be anxious for tomorrow. It is certainly challenging and has been fraught with tears at times, but God’s peace has been comforting and protecting them throughout. Your prayers have been a huge encouraging factor too, and we are all so very thankful for everyone of them!

If you would like to donate to help support Jubilee please click HERE. 100% of your donation goes directly to supporting her and her family as they battle this DIPG tumor. Thank you so much and may God bless you.

Jubie getting around on her tricycle.Image

June 11th, 2013 – Update

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Got to speak with Chelsea and Seth recently and have gotten an update on the situation and how Jubie is doing.

First of all she is off of the steroids currently, which is good, and she also has been in very high spirits, with a zealous joy despite the circumstance and lots of energy. Seth told me that when they ask her how her eyes, or anything, is feeling it’s either “good” or “great”, and if anything is bothering her she just sweetly replies, “I don’t want to tell you” or will change the subject to something happy. So despite not necessarily doing physically better, she is being very upbeat and absolutely joy filled.

Right now they are trying to determine whether the symptoms, which have been worsening gradually, are due to the DIPG tumor or from the radiation’s side effect of necrosis, as the symptoms can be very similar. As of when I spoke with them Jubie is having a hard time maintaining her balance and her eyes have been in pain and had trouble focusing and blinking. Due to her lack of balance they have not been able to get out and hike or bike ride, but they have found that she absolutely adores swimming and they have been going to the Glenwood Springs hot springs where she hops into her little inner tube and kicks/paddles all over the pool for hours. So that has been a great thing to fight the lingering side effects of the steroids, as she can easily get lots of exercise in the pool and not have to worry about balance.

Please keep praying for enduring peace and for God’s healing hands upon Jubilee and her family. Chels told me that it has been a tough week for them all seeing her balance fail, but that Jubie’s joy has also been such a blessing, challenge and inspiration. They are continuing to eat very healthy, raw, cancer fighting foods and giving Jubie natural remedies to fight swelling and the cancer. The people and prayers surrounding them have also been a huge encouragement and source of strength for them. Thank you all so much for your support and love, it is of more value than we can ever express!

I will continue to try to keep you all updated as often as possible and as quickly as I can. Thank you for your encouraging comments and most importantly your continued prayers for Jubilee Grace.

If you feel called to donate to Jubilee please click HERE. 100% of your donation goes directly to supporting them through this time and the costs involved. Thank you so much and may God richly bless you!

 

May 29th, 2013 – Overdue Update!

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Apologies for the very overdue update! With being on opposite sides of the world, and them being on their road trip, home for a short time, then back out camping, Seth and I have been playing phone tag quite a bit! But I was able to speak with them the other day and actually Jubilee answered when I called so I got to have a good little chat.

Over the past weeks Seth and Chelsea have been reviewing and making decisions concerning treatments for Jubie and seeking the Lord for His direction as to where He will lead them next. We want to say a very heartfelt and grateful thank you for the continual prayers for Jubilee and her family. He is their greatest help and comfort and we know that through this entire situation He has been in control and leading them into every day, and will continue to do so.

I am not certain as to the day(23-25th), but they returned home to Paonia and though their road trip was amazing, it was nice for them to get back home for a bit. They have been re-connecting with their many friends and Isaac and Jubilee were both very excited to see their little  friends and enjoy some summer fun together. Seth caught up on the farm with the chores that needed doing, attacking the grass, tending the orchard and replacing their faulty faucet. A very dear friend of theirs, Josh, who has known Seth since he was about 15, also came to Crow Farm to spend some time with them too.

The road trip through California was awesome, and they really enjoyed visiting family and friends, and making new friends along the way. They stopped at Bethel, a church in Redding, CA as a good friend of theirs arranged for a group of prayer warriors to get together and pray over Jubilee the night they arrived and the next day. Jubile was her sweet self and was happy to get prayed for. The 8th grade class at the school which is part of the church also stopped, put their curriculum aside and all prayed wonderful prayers for her, all emphasizing life and more life! One thing that Seth and Chels really realized through their time and the prayers at Bethel was that they have been constantly surrounded by the thoughts of hopelessness and the prognosis of death surrounding this situation and how important it is to continue, steadfastly, praying the power of Christ’s life over Jubilee and keeping their focus on Him and His peace. It has certainly been hard to not despair when the medical community and the research seems to all lead to only “terminal”, “inoperable” and  “fatal”. We ask you to please continue to pray for Jubilee, and pray that Jubie may have life, and have it abundantly! (John 10:10b) We pray believing that no matter how many years God gives her that she will continue to be filled with His light and that this trial will be an incredible testimony to God’s everlasting goodness.

After they left Redding they headed up the coast towards Oregon, camping and touring along the way. They got to see some lighthouses and also spotted Gray whales breaching repeatedly just off the shore, which was a beautiful treat. They then headed to Newport, Oregon to meet with Seth’s parents, Todd & Nadine, for five days. The weather was rather inclement for most of the time, so they stayed indoors together, but were able to celebrate Mother’s Day together and took advantage of the down time to have a relaxed time. It was a big blessing to get to hug, hold and pray over Jubilee, fly kites, take a few walks and go swimming with both kids one day so that Seth and Chelsea could go on a bike ride together to connect.

Isaac and Jubilee both wanted to go back to Bethel on their way back to Paonia, which they did, and Jubilee was prayed for in a very busy, crowded prayer room but God also used that stop for a divine meeting with a dear couple whom they bumped into in the parking lot. The woman prays specifically for children with brain issues and her sweet, gentle prayers blessed them with their kindness and sincerity for Jubilee and their family. While they stayed in Redding, some dear old friends of our family, the Reinhartdts, showed them wonderful hospitality, taking them out on Lake Shasta in their boat for the afternoon and having them stay overnight. Jubie and Isaac were both delighted that they were allowed to drive the boat for a short time too! Leaving Redding they headed toward Yosemite and had a wonderful drive through the park there.

They know their entire trip was orchestrated by God and was exactly what they needed to be able to hear His voice and get away from the busyness of life and to just be a family together. They were led to Santa Barbara in hopes of an alternative treatment, but instead it turned to a journey filled with wonderful people being brought into their lives, took them to beautiful places of God’s creation, gave them time with family and friends and most importantly helped them to refocus on where God is leading them next.

As for Jubilee’s current condition: She is doing extremely well, which has surprised the doctors. The steroids have made her quite swollen and has caused her to gain a significant amount of weight which is primarily fluid retention. Due to the speed of the weight gain her muscles have not been able to grow to keep up, so she is prone to some muscle weakness. They have been encouraging her to have consistent activity, including biking, swimming and walking which helps to keep her from needing any special physical therapy. They have also been working to reduce the steroids, and have significantly, by using natural supplements to reduce swelling in her brain stem due to the radiation and/or DIPG tumor. So far the effect has been good and they are hoping to bring her completely off of the steroids soon. They have found that the symptoms she has shown periodically, such as imbalance or inability to focus her eyes, is due to the necrosis from the radiation and not necessarily from any growth of the DIPG.

Once they had arrived home Seth called Children’s Hospital in Denver and spoke to the oncologist about the MRI they had scheduled for her, and when Seth explained Jubie’s zest for life and how well she is currently doing the doctor said that it was not necessary to get the MRI now and also assured they that if the tumor was growing her symtoms would be much more obvious and would be worsening much quicker. He believes, from experience, that the necrosis (damage from the radiation) will continue to heal and not be permanent. Please pray for that to be so just as much as for the tumor to never return! We are so marvellously thankful that the tumor does not seem to be growing at this stage!

Seth and Chelsea researched a new drug called Avastin, and through their research found that they do not believe it would be best for her as it’s side effects can be severe and extremely harmful, destroying any quality of life. They have connections with a person in Durango, CO that has helped many cancer patients through alternative treatments and nutritional diet and they are going to be meeting him at the end of this week. Please pray for wisdom and guidance as they meet and discuss further options, that the Lord would lead their way!

Sweet Jubie is continuing with her extremely healthy diet and is amazingly compliant when it comes to taking the natural remedies and drinking her green juice. She has maintained her wonderful attitude and prays daily that God would heal her “owie” in her brain and talks excitedly about turning five and when she grows up. Within the last few days at home she has enjoyed water fights and bike rides, which has shown a healthy energy level and joy in just living. Please don’t cease to pray for her, for life, peace and the perfect will of Jesus. Thank you!

If you would like to leave a message for Seth and Chelsea or Jubie, please respond below via the comments section as the incoming comments/messages do get forwarded to them and I know they appreciate your written thoughts and prayers very much.

If you feel God calling you to donate to help support Jubilee and her family financially, please click HERE. 100% of your donation goes directly to them. Any amount will help them through this trial, providing for them to spend as much time together as a family as possible. We are so incredibly thankful for your donations and your continual prayers for Jubilee Grace. Thank you and God bless. 

April 9th, 2013 – This Past Week

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This past week has held a lot. A lot of research, phone calls, connections, plans and prayers. Seth and Chelsea are feeling God’s leading and have settled on some plans for Jubilee and their family in the coming weeks.

After Easter everyone except my family (Rachel, Libby, Adi and myself) and my parents (Todd and Nadine) headed back to their homes and Seth and Chelsea got back on the confusing journey of delving into and sorting through the plethora of cancer research and treatments. One very apparent thing is that DIPG cancers/tumors are so rare that they have received very little research with basically zero progress in treatments or survivability for many years. There are a few alternative options that have been shown to attack cancers effectively and if used on Jubilee would be the first time they have been tried against DIPG. Which could be a breakthrough in fighting DIPG, but also carries the possibility of them being ineffective. But the very positive side of the treatments that they are looking at is that they are simple, non-invasive, nor riddled with horrendous side effects which would mar Jubilee’s quality of life. Seth and Chelsea have felt the Lord leading them to an alternative cancer treatment center in California, near Santa Barbara, and continue, as always to be so thankful for the massive amount of prayers for Jubilee and their family that have been relentlessly put before God by so many amazing people. Please continue to pray for them, for direction and clarity in their path and for great wisdom and peace that passes all understanding.

Right now, with the decision to head to California, they are packing and readying to take a family road trip, leaving the 10th. Their intent is to head to Santa Barbara for Jubie’s treatment, which should only last a few days, and then to make the rest of the trip, however long it lasts and whatever direction it takes them, to celebrate together as a family and enjoy every moment they have. One of Jubilee’s greatest wishes was to go to the beach, so they plan on camping on or very near the coast for at least awhile and making wonderful memories together.

Obviously their trip and its duration depends on Jubilee’s condition, which since the radiation treatment, has been quite good. Today I spent the day with Seth running to a doctor appointment in Ridgeway, followed by other last minute errands in Montrose and Delta. We got to take Jubilee and Liberty with us and we had an awesome time all together, as well as taking our little girls out to a Chinese place for lunch, which was priceless. Jubilee is her sweet, beautiful self and laughed and smiled all day, but Seth noticed that she tended to have a bit of trouble blinking and would sometimes look sideways when walking to keep herself straight, which he said reinforces all the more that they need to go, do the treatment and be a family as much as possible. Please don’t cease to be praying for Jubilee and her family as they head out on this trip. Pray against confusion and stress. That they would all be unified and covered by God’s peace and protection and that this treatment, Lord willing, would be positive and that it will effectively combat and destroy Jubilee’s tumor.

We also wanted to say a HUGE thank you to all of those who were out and participated in the Ride for Jubilee in Colorado Springs! The day after the event Mike and Leah, who were the coordinators, made a quick trip over to Paonia to see Jubie and they gave us a run down of how well it all went. We want to thank you all for your participation and the funds that were raised to help with the expenses of Jubilee’s upcoming treatment. Everyone of you who was involved at any level directly impacted, and helped, Jubilee and her family massively. We cannot thank you enough!

Please continue to share Jubilee’s story and keep her in your prayers, on prayer chains and let your churches know. And remember, “pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man available much.” (James 5:16b)

The photo at the top of this post was taken by Liberty while we had our Chinese lunch (photo below), and it also was a pretty frigid winter day today, leaving Paonia with about 4-5 inches of snow, so we had a bit of a snowball fight while running errands. 🙂

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If you feel directed to donate financially to help offset the expenses that their family is facing please click HERE to make a contribution. We are extremely grateful for your support and any amount will help Jubilee and her family face the future. 100% of all contributions goes directly to them. Thank you so much and may God bless you.

March 4th, 2013

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I spoke with Seth and my Parents last night and got a little more info:

Jubilee has been released, but not because she is improving, only because there is nothing they can do until the Radiation treatment is ready. She is currently on doses of steroids to keep the inflammation down around the tumour and that helps her be more herself. They are staying at our cousin’s house in Denver. Our parents are also in Denver.

The Radiologists said that they can’t do treatment faster because they have to make a custom mask for Jubie, that she has to wear and gets screwed to the table so she cant move at all. The other issue was that they only do anesthetics Monday-Friday, and she will have to be knocked out while undergoing the radiation. But, depending on how she’s doing by then and the progression of the tumour, they may choose not to do it, and just head home to Paonia to be a family.

Please pray for them as the doctors said that the progression of the tumour will likely take away Jubie’s balance and walking, then sight, speech and brain function. Please pray against that, and for peace.

We know God can heal, and we continue to pray fervently for that and His glorification, regardless of whether He chooses to extend her time here or take Her into His arms.

Thank you again for sharing and praying for Jubilee. They have certainly felt your support and prayers.

I believe there is a fund being setup to help them with life expenses during this time, and I will post about that when I know more.

Also, please pray for God’s traveling mercies as Rae and I and our girls try to get out there. Thank you.

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