Acid reflux,yeast rash and thrush :(

Please read update below from Courtney and pray for dear Shannon!


Update: Shannon is battling severe acid reflux, gas due to gut inflammation and a yeast rash. Her fever is down. She has lost some weight. They are adding a medication back called regalin. Fewer doses in hopes she won't have diarrhea again.
The GOOD news: they have cord blood ready for transfer.
The FRUSTRATING news: chemo can't start until Medicaid approves a transplant. The process can take weeks.
Please pray with us for God to move these bureaucratic mountains.


Psalm 62:5


For God alone, O my soul, wait in silence,

for my hope is from him.


Jenny

UPDATE!!!!!!!

from Courtney : )


Update: HemOnc has 5 Cord Blood typings on hold for Shannon. They will have a transplant plan next week. That's all they will tell us. They aren't saying that will minimize the amount of time they initially told us. I'm hoping next week will go like this:
"You know when it's your birthday and no one says happy birthday to you all day or gives you are card or a present, but then that night you walk into a surprise party?" ...yep. This is what we are hoping for. once they have a plan it goes like this: chemotherapy, bone marrow transplant, then an average of 21 days to graft into her body. They already did all her preliminary blood work, nasal and rectal material check and all other necessary pre transplant labs to make sure Shannon is in "good health".
Our hope is that they did all the preliminary labs on Shannon because they intend to move quickly.

From Proverbs: The heart of a man plans his way, but the Lord establishes his steps.

Also, Teagan was able to see her sister today, so beautiful.

i love marathoners.

Courtney writes of needs and heartaches.(updated caring bridges blog link below) im provoked my her raw honesty and posture
to put her faith in our Great God... wont you continue to join me in uplifting these
precious saints??

We continue to be so grateful for the meals and financial support. We are in need of a Hepa Filtration system for our home and to pull
out the small carpeted area on our first floor and put in hard inexpensive flooring in that space. This will
help us sanitize with bleach easier and keep our home germ free to keep us healthy as we visit the hospital
to care for shannon's needs and to eventually bring her home to a safe space.
God bless and please continue to pray with us as we plead to the Lord for deliverance.

in constant prayer,

jenny

I LOVE THIS FACE!!

Liam Not a Match.

Here is the latest from Courtney...

Update: Thank you to all who have prayed for our situation and for Liam to be a match for his sister. It pains us to announce that Liam is NOT a match. But God's ways are higher than any other and we believe that fully and completely.

"I will lift my hands to believe again. You are my refuge. You are my strength. As I pour out my heart these things I remember...You are faithful Lord forever."

your prayers are always appreciated.


Jenny

Pray For Shannon's Tummy....

Latest update from Courtney : )

Update: Shannon had a rough night. The medications cyclosporine and acyclaver are given every eight hours and take a total of 4 hours to complete with a cycle through her chest line. This seemed to bother her last night. Lots of tummy problems. Vomiting and diarrhea and gas pain. The culprit is unknown. Lots of meds and I asked to pull back on a couple. So zantac and regalin are now being given in smaller doses to give her system a break. Doing lots of laundry today to clean her clothes from projectile vomiting. Please pray for her stomach to settle. We want her to continue to gain wait and I believe this is God's plan as well.
Dr Boyer from HemOnc said our job is to keep her eating and gaining. No word yet on if Liam is a match. Her skin is still improving although very dry from the hospital hepa filtration. Exhausted, but still joyful and hopeful.

ephesians 6:18--

praying at all times in the Spirit, with all prayer and supplication. To that end keep alert with all perseverance, making supplication for all the saints...



Jenny

Update on Shannon, please pray : )

Hey all,

I read this from Courtney not too long ago.

Update: Shannon needs IVIG which is intravenous IGG red blood cells. Risk: fever and shock. Tylenol given preemptively to prevent fever. Atarax given to help in shock prevention. Prayer needed here. The hope is the IVIG will boost antibody production. She is still looking good. Feels so good to hold a chubby baby girl in my arms. Can't for the day when I can touch her skin and give her kisses not through a mask.
Here we go...


Romans 8:28

And we know that for those who love God all things work together hfor good,8 for ithose who are called according to his purpose.


Jenny

Blog for Shannon : )

Hi friends and family,

Courtney has started a blog with their story and regular updates, so you can
refer to that now : )

http://www.caringbridge.org/visit/shannonhopemurphy

im so grateful for your comments and prayers for our family. God is so good, always.


Love,
Jenny

THIS FRIDAY FOLKS!

more updates from Courtney.. they find out this friday if Liam is a bone marrow match for Shannon!

Update: HOPE - this morning's meeting with our bone marrow team brought hope. If Liam is a match, and we should know by FRIDAY, then a quick surgery for the two line ports in her chest an immune suppressing drugs start immediately. The chance for Liam to be a match is 1 and 4, but our God is greater, and His will be done!! We are on our knees that He make Liam a match or miraculously heal Shannon. They want her on immune suppressing drugs as soon as possible to heal her skin before chemo, so an IV in head is the plan. This way meds, which her stomach has not and cannot handle, will go in intravenously and not cause her to vomit. Her formula is being increased in calories by her nutrition team to hopefully increase her weight. Please pray her stomach tolerates this and her weight increases.
WE CRY OUT TO THE LORD WHO IS MIGHTY TO SAVE AND PUT OUR HOPE ON HIM.
Thank you for praying and to all those giving to our family through meals and finances, we pray your resources be increased and replenished.
Love,
Courtney and Ryan.

{more info on the feeding tube}

from courtney less than an hour ago below..

Please lift Shannon to the Father. She has lost weight. She is 6.9 oz. A feeding tube is being discussed. Eventhough she eats so well she is not gaining and she continues to vomit after each dose of anti viral.
Our God is greater. We remain hopeful.


For God's Glory,

Jenny

Feeding tube...

thanks so much for praying and desiring to know regular updates for my brother and his family.. it is really touching and humbling. I read this today from Courtney.

Update: Shannon has not gained weight. Doctors feel a feeding tube may be in the near future. She is still unable to keep down the anti viral and there are no options of waiting to give it until the line is put. A"line" is a open port surgically implanted in her chest to give doctors and IV team direct access to a vein to give and take blood as well as give IV fluids and meds. Because of risk of infection the line cannot be put in until we have a donor match. Thus we are left with a feeding tube with hopes that giving the medicine directly to the stomach bit by bit will help her keep it down.
Blood draw tomorrow or Tuesday, but for now we rest with another day without the trauma of a blood draw and hoping for weight gain and rest.

Please continue to pray for faith that God is in control and that Courtney would remember that we were never promised a life without suffering but we can take heart that Jesus has overcome the world and He is our only hope : )

John 16:33

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Romans 8:31-39

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies.Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, vwho indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,
“For your sake xwe are being killed all the day long;
we are regarded as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who loved us.

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, 39 nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Romans 12:12

Rejoice in hope, be patient in tribulation, be constant in prayer.


love,
jenny

Pray for Liam's sickness...

Update from Courtney// She spent the night at home and now it appears that Liam
has croup and so she cannot be in the hospital


Please continue to pray our family. Our son Liam, who never gets sick, came down with what sounds like croup. Waiting to hear from our team of doctors if I'll be able to be with Shannon or have to wait 3-5 days. Heartbreaking.


Jenny

More Updates : )

Hi there : )


Here is another update from Courtney

please PLEASE pray for Liam to be a match. If he is not the international donor pool can take 2-4 months! I'm hoping for a miracle still. I know the Lord can perform miracles and heal her body with a word. The HSL typing for liam and shannon's blood work can take another 2 weeks or by a miracle come back sooner and then things would move fast. In the mean time they want her to grow grow grow. I'm praying for Shannon to reach 8 lbs on the next week. All things are possible through Christ. Pray with me.

I saw this photo below of the two of them and this verse came to mind, Romans 12:15,16

Rejoice with those who rejoice, weep with those who weep. Live in harmony with one another.

Please pray for continued strength and trust in their Creator, Savior, and the One who knows all things and WILL NOT with hold ANY good from them.

thanks,
Jenny

Shannon's skin & throat...

hi friends,

below is an update from Courtney. Would you please pray for healing of her rash and throat?

Update: today is a 4ml blood draw. IV team should be here about 2 pm. Please pray for the Holy Spirit to pour down His peace over Shannon. She automatically cries when she is laid on the bed bc she associates it with pain. She sleeps in bed with me, in her swing or in our arms now. The vistiril is continuing to allow her to sleep. It still causes dryness of throat but PRAISE GOD her skin is less dry today!! The rash looks bad but I believe she is more comfortable. Still gas and tummy trouble but the living waters of Lord can rush through and bring calm to her tummy and bowels! Amen!
Thank you for interceding for our daughter. Please pray for Liam for peace as he adjusts. For peace for my husband and I.

THANK YOUUU!!!!!

jenny

Follow Up(date) from Courtney

Today was a family affair. Liam and I both had blood drawn. Liam did amazing!! He loved playing with all the awesome toys in our unit. It helped me emotionally to spend more time with him and have our family here.
Shannon's rash is worse today. Tylenol, vistiril, and sweeties (sugar water) have helped to keep her comfortable. Today was a huge blood draw so she needs to eat well and rest so her body can recover. Tomorrow more labs and then...WAITING...two weeks to be exact. Waiting to hear if Liam is a match. If he is things move fast. If not then they start looking in an international pool of donors. Pray, pray that Liam is a match. Pray for healing and that match won't be needed. Pray that a miracle will blow the minds of these doctors that don't believe anything short of their plan is possible. God blow their minds and receive You glory!

Strength will rise as we wait upon the Lord. So does our little baby Hope. Shannon's Hope :)

{ FYI, Shannon was diagnosed with SCID--Severe Complex Immune Deficiency }


Jenny

UPDATE : )

Today my darling nephew Liam will be tested to see if his bone marrow is a match for Shannon.
Please pray with me and Ryan and Courtney and so many others that it is?

Ryan texted me yesterday and said that Romans 8:24-25 was their whole life. What a clear, amazing truth to cling to! [and it happens to be my favorite chapter in the entire Bible]

For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we await for it with patience.

THANK YOUU!!!!!!

Please pray for Shannon Hope Murphy {my beautiful niece}

Hello,

I just wanted to send or start possibly a 'prayer chain' for my niece Shannon who is just a little over a month old.
She was admitted to the Children's Primary Hospital at the University of Utah a few days ago due to a rash/eczema
that would not go away and possible major food allergies.Needless to say, it has been very challenging for my brother Ryan and his wife Courtney
with many literal sleepless nights and frustrations in not being able to care for their precious newborn child.

I received a call from my brother today stating that the doctors found that Shannon was literally born without an immune system.
I do not know the name of this condition, but it is very rare and is basically a genetic combination of mom and dad. Thankfully,
she did not get sick! Courtney was able to breast feed and that helped in saving her life.
Praise God and that her condition is treatable within 3-6 months. She will need to be treated basically as
an HIV positive patient. She will undergo Chemo Therapy and a bone marrow transplant. Thankfully again, my nephew Liam appears
to be a great candidate for that. Also, this hospital is one of the top in the nation!
Could you please be praying for them? For God to heal Shannon. For financial provision. ( i do not think they have medical insurance : ( !!!! )
For a continued unity in their marriage. And for their church family to continue to support them and surround them with practical help
as there is a long road ahead. And ultimately continued trust and faith in their Saviour Jesus Christ!!!!

Thanks so much on behalf of the Murphy Family,

Jenny