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. 

May 6th, 2013 – Roadtrip Update

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I just received an email from Seth and Chelsea and it sounds like they have been having some super fun quality times together along the California coast.

Make-A-Wish ended up providing them with a wonderful time in southern California, which was a blast for Isaac and Jubilee. Jubie’s favourite parts were getting to pet a dolphin, making sand castles and getting to go on the Pirates of the Caribbean ride at Disney Land. It was a very memorable and fun time together.

Jubilee has remained on steroids since the 19th or so, but Seth and Chelsea would really like to wean her off of them at some point, and are trying with various natural herbs, as the steroids can be quite damaging over a long period. But she has been doing very well on them, returning very much to herself. The doctors at Children’s in Denver really want to do another MRI when they head back to Colorado, and they are almost certain that her symtoms returned as an effect of the radiation called necrosis, which in itself can be deadly. They are recommending a treatment that is intravenous and every 2 weeks, and that without the Avastin treatment she may need to be on the steroids indefinitely. The doctors also are very curious to see if the tumor has shrunk, or if there are any other effects that may have occurred. Jubilee has an appointment on the 24th and they would very much appreciate prayers for wisdom in that decision.

They are continuing to pray about further holistic/natural remedies, some of which are offered through the Issels Clinic in Santa Barbara. But Chelsea said that their mainstay of hope, day by day, is “continuing to hold onto the truth that only Jesus can treat her and only through Him can we stumble upon the right one(treatment)“. Please pray also for guidance and wisdom in choosing one, or any, of the possible treatments they are looking into.

They are hitting the road again today, heading north towards Redding and Bethel Church to meet some friends who are organising a prayer team to pray for Jubilee. This past week they have been camping along Big Sur and Highway 1, seeing whales, exploring coves and even taking a swim in the brisk Pacific before heading to Santa Cruz and hiking. After that they plan to head back towards the coast and go north up to Newport, Oregon to meet with Todd and Nadine.

God has been very good and Jubilee has been doing really well so far, and has been having an absolute blast on the road trip. Isaac has been such a great big brother too, loving on her and always playing together on the beach, chatting, building sand castles, exploring and playing games. Chelsea said that she can tell Jubie is feeling good because she is singing all the time, and last night was singing Rare Earth’s “I Just Want To Celebrate” when she was going to bed! Chelsea also said that Jubilee knows so many people are praying for her and talks about it all the time and they are all so thankful for your continuing prayers.

If you feel directed to help Jubilee and her family financially, please click HERE to make a donation. 100% of your donation goes directly to them and will continue to enable them to take advantage of every day together while they seek the Lord in this very hard situation. Thank you and God bless.

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