Update, Friday, April 1

Hi friends:

Grace had an appointment with Dr. Ness in clinic yesterday, and we saw Dr. Dure as well, who both gave us an incredible amount of time and continue to be determined, thorough and caring. We are grateful for their work!!

The IVIG treatment two weeks ago has helped some with Grace’s symptoms, but not as much as last time. Grace is starting another 4-day round of high powered steroids :-(. We don’t like steroids.

This morning’s PET scan was “negative,” showing no sign of a tumor or “hot spot.” Is this good? It seems so, but we are back to no “cause” for Grace’s condition except a possible virus from before Christmas.

Plans are to continue treating Grace following the protocol set out by Dr. Pranzatelli, OMS specialist in Illinois who has done much research, which includes IVIG, dexamethazone (steroid) and rituximab. Dr. Ness continues to share Grace’s situation with others around the country and is ordering other tests from Mayo.

Again, we cannot completely say what your love and prayers mean to us. Thank you for continuing to pray with us for Grace’s complete healing, thank you for the encouragement you give along the way.

Yay for spring and Grace’s perm looks really cute.

🙂 Lynn

Oh God, You are my God, and I will ever praise You!

Church Shortlink

Update, Saturday, March 26

Well…the journey continues! It really has been quite a path that we are walking down that has taken us to countless doctors, 3 CT scans, 1 angio CT scan, 3 MRI’s, 2 IVIG treatments, 1 visual nerve brain scan, 2 rounds of chemo, multiple (lost count) doses of different kinds of steroids, 51 viles of blood drawn for test and analysis, consultations and visits to leading neurologists of all kinds and this week promises to bring new opportunities of fun and excitement!

As the last few days have progressed we do seem to see some slight improvements with Grace’s condition due to (we think) that effectiveness of the last IVIG. We pray that the coming days will bring us better results. In the next week we have an appointment at Children’s to see several neurologists. We are waiting to hear from Kirkland Clinic for an appointment to have a PET Scan.

With all this we still don’t have a cause, cure or definite diagnosis of what is happening to Grace. We do however have much to be thankful for.
• A family that is incredibly supportive of one another.
• Friends that send cards, bring food, ask about Grace all around town, pray daily for healing, send emails and generally support us!
• A church and staff that displays love in an overwhelming way.
• Children’s Hospital that has an incredible staff and a team of doctors that are determined to find a cure for Grace.
• Even BCBS is pulling for sweet Grace!
• Sweet friends (and school teachers) of Grace that continue to care for her.
• Unbelievable intercessory prayers from around the country.
• God’s grace that comforts us and gives us confidence as we face the future!
How can you pray this week?
• For healing and the doctors’ wisdom as they consult with one another.
• That I (Buddy) don’t get put on a jury this week…yes I have been summoned for jury duty!
• That we make it to April 15 so Lynn will be finished with tax season!
• That Grace will stay strong and positive.

Thanks for your love and support,

Buddy

family, Grace Shortlink

Update, Wednesday, March 23

Hi friends:

Thank you for continuing to pray with us for Grace. She is a small step better since the IVIG treatment Thursday/Friday of last week. We are hopeful that the treatment will continue to improve her symptoms.

Grace has much bigger hair today than a week ago. Re-perm was indeed effective. Small girl, big hair. 🙂

Enjoyed the beautiful day….
Lynn

“…a time to heal…” Ecclesiastes 3:3

Church, Grace Shortlink

Update, Tuesday, March 15

Friends:

Plans are for Grace to be admitted to Children’s Hospital on Thursday for a two-day IVIG treatment. Grace had this treatment about 6 weeks ago and it greatly subdued her symptoms for about two weeks. Any relief will be welcome, but we are praying for permanent relief.

And, speaking of permanent, planning to have Grace’s hair “re-permed” tomorrow.

🙂 Lynn

“Come, Thou Fount of every blessing, tune my heart to sing Your grace.
Streams of mercy, never ceasing, call for songs of loudest praise.
Teach me some melodious sonnet sung by flaming tongues above:
Praise the mount, I’m fixed upon it, mount of Thy redeeming love.”

Church, Grace Shortlink

Update, Wednesday, March 9

Home from another MRI and quick visit with Dr. Ness. No initial significant changes on the MRI. Tenative plans are to have another IVIG treatment to relieve Grace’s symptoms, but not sure if that will be this week or next.

We are way too familiar with Children’s Hospital. 🙂

Still praying for wisdom, strength and healing…
Lynn
Psalm 121

Church, Grace Shortlink

Update, Saturday, March 5

It’s been a rainy, but better, day at the Champion house. Although we’re not seeing improvement yet in tremor, eye movement & balance, Grace is not feeling as badly as she did last treatment. Same, expected side effects, just not as much. And so, our definition of a “good” day is currently “less bad” and we are grateful for it. 🙂

Plans are to have additional tests next week, still looking for cause of Grace’s condition, as well as see Dr. Ness in clinic.

“Blood vials drawn” count = 47.

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which is beyond all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

Thank you for praying with us.

Church Shortlink

Update, Wednesday, March 2

We are at Children’s Hospital awaiting a second treatment of rituximab for Grace. We are blessed to have such a great resource so close to home. Plans are to go home tomorrow.

We are praying for wisdom, insight for Dr. Ness, Dr. Presley, strength and healing for Grace. Thank you for praying with us.

Physical Therapy has suggested we borrow a “recumbant stationary bicycle” so Grace can exercise at home. Anybody have one? If you have one we can borrow for a bit, call Whitney Rother, Buddy’s assistant, at 228-1020. 🙂

Love and thanks for your constant encouragement,
Lynn

“Keep me safe, O God, for in You I take refuge.” Psalm 16:1

family, Grace Shortlink

Update, Saturday, February 26

Grace has had a difficult week with nystagmus (eye movements) and tremor as bad as it has been so far. She has also dealt with headaches, body aches, trouble sleeping, etc., which may be from the treatment or the steroids, and just generally being worn out with the whole situation. Today has been the most promising day of the week as it’s been a beautiful day, and Grace even got on her horse, Tristan, for a bit.

Many of you have been through (are going through) illnesses, as well. This is certainly the most difficult thing that has come our way. We have learned medical terms we do not want to know. We have been blessed by support and encouragement from so many, and much prayer for healing on Grace’s behalf. Several times I have met someone (for the first time) who said, “I am praying for your daughter.”

Plans are still to have another rituximab treatment mid week. Thank you for praying with us for Grace’s complete healing.

“Where does my help come from? My help comes from the Lord, the Maker of Heaven and earth.” Psalm 121:1-2

 

Church Shortlink

Update, Wednesday Afternoon, February 16

Quick update: We are home from a short but intense hospital stay where Grace was given a treatment of rituximab, a type of chemotherapy. No serious adverse reaction to the treatment, just the expected side effects, which she is dealing with now. Plans are to have a second treatment in two weeks. She is also starting a stronger steroid.

Thanks keeping up and praying for Grace,
Lynn

family, Grace Shortlink

Update, Wednesday, February 16

Our trip to Springfield Illinois a blessing as it was very beneficial for a potential diagnosis for Grace’s condition. On Friday, Grace had a very thorough evaluation that was documented for future research and also had her third spinal tab…which now for some reason they refer as a “lumbar puncture.” That term just seems more aggressive! Certain test were performed that had to be done within an hour of the collection of the fluids. These test indicated that Grace has 7 times the normal amount of “b cells” (Beta Cells) which could be causing her condition. Other test are still being conducted that we will hear about in the coming weeks that may give us a “cause” as well as potential treatments.
We are grateful to have such great neurologist from Birmingham to Illinois and other places around the country who are working to restore Grace’s health.

Yesterday, Grace was admitted to Children’s Hospital in Bham to begin another treatment that we pray will eliminate the “b cells” in her system. At this time we are not sure how long our hospital stay will be, but we do not anticipate being there very long. We continue to be overwhelmed by the prayers, love and support that so many friends, and new friends, are expressing to us.

It is our prayer that the Great Physician will use whatever means He desires to heal Grace!

Thank you for praying!
Buddy

family, Grace Shortlink