Joyful in hope

I'm writing an update of HOPE and of that, we are rejoicing.  Coltrane has outlived his time frame that was originally given to him and he is continuing to remain stable.  At this point, Coltrane is living his days surrounded by loved ones and watching his favorite shows from his favorite dinosaur recliner.  Since reducing the dose of steroids, Coltrane's swelling has come down and we can see his eyes again!  His mood has improved and he no longer wants to eat everything in sight (all side effects of the steroids).  We have also increased his pain medicine again and he is remaining fairly comfortable.  The only time he really seems to be having great pain is when he is being moved around.  He still has a few minutes of play in him during the day.  They are short spurts, but we still see signs of his 3 year old self from time to time.  Yesterday I made him laugh and felt like I had just won the world series.  Those moments are few and far between but so cherished.  Today the hospice nurse was here and was very impressed by how "good" Coltrane looks.  She said that he is certainly stable and even seems to be showing some small improvements.  For example, Coltrane has a lot of bruising probably due to low platelets and we didn't expect to see those improve because of the cancer invading his body but his bruising is now looking better and there are no new bruises.  His bed sores are almost gone, which the nurse said may not ever go away and possibly get worse!  Praise God!  Also, we have been taking Coltrane to a Kinesiologist and during his testing on Monday, he was testing that his right adrenal gland was present even though it was removed last year during his surgery.  We have been praying for Coltrane's organs to be restored and I don't know what it means but it is exciting to think about and definitely fills us with hope of a total healing and restoration.  Whatever happens, Coltrane is already a miracle and I have never seen so much prayer and support for one person before.  

We stand humbled and grateful for all of the prayers that continue to bombard Heaven on our son's behalf.  You all have taught us so much about what it means to truly intercede for one another and show love and support through the most difficult of times.  We were so grateful to have the elders of our church, our lifegroup, people from the local Catholic church, our neighbors, family, and countless friends have gathered in our home to pray for us.  Also, The Pointe Church held a special prayer day to intercede for Coltrane and another sick child in the community.  We know that God is constantly hearing people lift Coltrane to him in prayer and that is so powerful.  

Please pray for:

Coltrane to receive a complete healing

Coltrane to be made comfortable and pain free

Coltrane's mood to be playful and happy

Jackson to adjust well to the change of lifestyle and not being able to play with his brother the same way

Wisdom for all who are part of Coltrane's care team

Justin and I to have renewed energy for giving Coltrane the best of care at home

Renewed strength and peace for all of our extended family

So much love,

Sonja, Justin, Jackson, and Coltrane the Consistent

Romans 12:12

"Be joyful in HOPE, patient in affliction, faithful in prayer."