Updates #1-25

These posts were written before this site was created, but we re-post them here for those who would like to read them. They are simply stacked up below, separated by horizontal lines, starting with the very first post at the top.

 

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June 26

Dear Friends,

Please pray for our little Amos. Earlier today we discovered that he has a brain tumor and will likely be undergoing brain surgery today, Friday, in the morning. Possibly as early as 7:30am. We are in CA at the Children’s Hospital of Orange County.

Please join us in pleading with the Lord for our dear son Amos. Pray for wisdom for the doctors and that the Lord would preserve Amos. We know that He holds Amos completely in His care. Pray for courage and strength as we seek to trust in His goodness.

Please ask others to pray as well. I’m sure I’ve missed friends and loved ones on this list.

Because of Jesus,

Kelli

The Lord is good, a stronghold in the day of trouble; he knows those who take refuge in him. Nahum 1:17

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 June 27

Dear family and friends,

Many of you know about the events of the past few days for our family. While in California visiting Kelli’s parents for a few weeks, within the first few days of being here Amos’s health began to decline. After seeing several doctors we still were not clear as to what the problem was, but thought it may have been viral. Blood work came back negative, however, which prompted a CT scan on Thursday as a precaution. To our shock it came back showing thatAmos had a brain tumor.

Things happened very quickly going from “he may have a virus but he’ll be fine” to “our three-year-old has a brain tumor.” In the short time frame between those two pictures of what was happening, I had gone to Lexington for a friend’s wedding, but on hearing that there was no virus I came as fast as possible back to California. I arrived just before Amos went into surgery, at which point he had been sedated for most of the night, with Kelli and her mom with him.

The three hour surgery went as well as possible. The neurosurgeon thinks he removed the whole tumor, which was about the size of a golf ball and located near his brain stem. Both of those factors were bad. But thankfully it went well. Amos has an MRI at 12pm PST today to see whether it is in fact entirely removed, and we will likely have to wait a week to hear results of the biopsy. Amos will have his breathing tube removed later today, Lord willing, and will regain consciousness. We can’t wait to talk to him.

Please join us in prayer for our son Amos. Praise God for the excellent facilities and physicians here at CHOC. Praise Him that the surgery went so successfully and that the prognosis is tentatively positive. Pray that the MRI would definitively show no trace of the tumor remaining. Most of all, pray that God would hear the prayers of His people, and that the tumor would prove to be completely benign. Pray for Amos, that his little body would heal quickly and completely, and that Kelli and I would tirelessly care for him during this time.

Please share this freely, or copy and paste into an email. We are thankful for the Church to bring our prayers to the Father on Amos’s behalf.

Let us hold fast the confession of our hope without wavering, for he who promised is faithful. Heb. 10:23

Only through Christ our King,

Will and Kelli

[Pictures from just a few days ago.]

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June 28

Amos Update, 10pm PST. Please share freely.

Dear Friends,

Thank you so much for your prayers. A brief update.

Amos’s scan today showed a possible small, additional tumor. The neurosurgeon is consulting with a colleague because he is undecided whether it is, in fact, a tumor based on the images from the scan. Another operation may be on the horizon. Pray that this proves unnecessary.

Amos did experience complications tonight when they tried to take him off of the breathing tube and out of sedation. He was having breathing trouble due to a few possible factors, most likely a minor seizure, which is apparently not uncommon after brain surgery. After his stabilization, he’s once again sedated and on the breathing tube and will remain so for the next few days. Another CT scan tonight showed that his prognosis is unchanged after tonight’s events, thankfully.

Please pray that his lungs will heal perfectly. That he will gain strength from the feeding tube he’s been put on and that this strength would make a tremendous difference in his little body. Pray also that our neurosurgeon would make a clear and correct decision regarding the MRI results and the next course of action. And most of all continue to pray that the tumor is completely benign.

Finally, please pray for courage, strength, and that the Lord would sustain and preserve Amos in every way.

In Christ,

Will, Kelli, Amos, and Luke

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June 29

Monday 6/29 Amos Update #2
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Dear Family and Friends,

We continue to be ever grateful for your prayers and kindness towards our family. The past few days have been very difficult and we are still unsure what these next days, weeks, and months will hold for us. The past day and a half has been a period of rest for Amos. He is doing fine, stable, and is even somewhat responsive through the sedation at certain points, which is good.

There is in fact another bit of tumor left that needs to be removed. Our neurosurgeon is advising another operation, which is scheduled for tomorrow morning the 30th at 12:30pm PST [time change from 10am]. This news is hard for us to stomach right now, but we are thankful for the wisdom of the doctors in advising this next decisive step. Please pray for endurance and strength for Amos and for us.

The doctor also said that the tumor is likely cancerous. We won’t know for sure until the end of this week. Please pray for us – that we would find hope in the Lord while accepting whatever He has in store for Amos and for us. It is a difficult thing to imagine this as part of Amos’ (and our) story, but we know that the Lord has written each day of Amos’ life already. Pray we can trust Him in that. We will have the results of the biopsy by week’s end and know for sure what we are facing.

Please continue praying for Amos. Pray that the surgery goes perfectly tomorrow and that afterwards no trace of tumor remains. Pray that, after a period of rest, Amos can successfully come out of anesthesia and off of the breathing tube with no complications, fully alert and well. Pray that Amos will have no deficits as a result of the surgeries, but that he would come back to us whole and healthy. Pray also for protection against infection. He’s been running a fever but there’s no virus that’s been detected. Finally, please continue to pray that in the Lord’s providence there is no cancer, and that whatever treatment proves necessary will be manageable.

Thank you over and over for your love and care. We are desperately needy right now and your prayers, verses, and notes of encouragement have all blessed us. Since many have asked, our room number is 622 in the PICU at CHOC in Orange, CA.

Please pray for each member of our family as this weighs on us in different ways. Pray especially for Luke as his first birthday approaches this Saturday and we are not together. Pray for comfort for his mama’s heart (and daddy’s too).

The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold.” Ps. 18:2

In Christ,

Will, Kelli, Amos & Luke

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June 30

Tuesday 6/30 Amos Update #3
6pm PST – please share freely

Dear Friends,

Thank you so much for praying today. Amos came through his second surgery after about two hours and it seems to have gone very well. It’s difficult to tell what “well” means but for the purposes of today’s goals, our neurosurgeon is pleased. Amos continues to be stable, comfortable, and sedated. It’s been another hard day for us but we are thankful for, and very much in need of, your continued prayers.

The plan is to have a followup MRI tomorrow and if that is all clear, we’ll begin to determine when Amos is ready to come off of the breathing tube and out of sedation, likely on Thursday.

Please continue to pray these specifics for Amos:

– that tomorrow’s MRI would be clearly free of any remaining tumor.
– that Amos would recover quickly and well from this second surgery.
– that Amos’ cough and gag reflexes would be present when it’s time to take his breathing tube out.
– that he would wake up whole and able to communicate with us.
– that the pathology results would be benign.
– For peace and hope as we wait, and that the Lord would continue to sustain us through this journey.

We thank you for the ways that the Lord has used you all to encourage us. Please share freely and thank you for the kind notes and messages we’ve received. They are a blessing – even the ones from strangers!

This is very hard, but we know that the Lord is faithful and that He promises to never leave us or forsake us. We know that He loves Amos most of all. May He be our strength and help in this time of need.

“Be still, my soul: your God will undertake
To guide the future as He has the past.
Your hope, your confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: the waves and winds still know
His voice who ruled them while He dwelt below.”

In Christ,

Kelli, Will, Amos, and Luke

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July 1

Wednesday 7/1 Amos Update #4
9pm PST – please share freely

Dearest friends and family,

We don’t really have much news but we wanted to touch base with everyone anyway. Amos had a quiet day of rest aside from his MRI, which we are waiting to hear results about. It’s such a comfort to know that you’re all praying. Your messages, notes, and gifts continue to encourage and sustain us as we look to the Lord for hope and help right now.

I just wanted to share two things that have encouraged our weary hearts in all of this. The first is the reminder that the name Amos means “carried”. We never imagined that this is what the Lord would be carrying him through but it is a comfort to know of this promise embedded even in his name.

The second encouragement, related in a way, is that the last Bible verse Amos memorized was Isaiah 43:1 which says, “Don’t be afraid. For I have redeemed you, I have called you by name, you are mine.” It’s a comfort to know that these truths are with Amos even now. Our prayer is that he knows the Lord’s presence and that he is not afraid.

We share these things as a reminder for our own hearts. We need to hear and hear again that the Lord is good. That he is watching over precious Amos and directing each step of this very difficult journey.

Please continue praying for all aspects of the situation that we mentioned yesterday. Praise the Lord that the MRI went well, and pray that it would clearly show that the tumor has been completely removed. Tonight we ask especially for prayer that Amos’ cough and gag reflexes would return quickly. These are essential to him being able to wake up and come off of the ventilator. Please pray boldly for this as we long to see Amos wake up and be with us once again.

Great is our Lord, and abundant in power; his understanding is beyond measure. Psalm 147:5

In Christ,

Will, Kelli, Amos, and Luke

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July 2 Morning

Thursday Morning 7/2 Amos Update #5
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To our family and friends,

We are so grateful for your prayers. It is just about 9:00am here in California, and a little while ago our neurosurgeon came in and told us that the MRI from yesterday “looks beautiful,” and that he is very pleased with the results. We are praising God! Thank you for joining us in thanksgiving for this answered prayer.

Our doctor also has decided that we will try to bring Amos off of sedation today. As we mentioned yesterday, his gag and cough reflex is very important to this process, but based on his experience the neurosurgeon believes the sedation is likely responsible more than any side-effects from the surgery.

Please pray for Amos throughout today as he wakes up. Pray that he would revive fully and easily, that all his faculties and reflexes would be present, and that we would be able to speak to him today. Pray that he will be whole and healthy, and that the doctors would make wise and careful decisions about today’s process.

On You was I cast from my birth, and from my mother’s womb you have been my God. Ps. 22:10

In Christ,

Will, Kelli, Amos, and Lucas

July 2 Evening

Thursday Evening 7/2 Amos Update #6
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Friends and Family,

It is now after 7pm PST here and we wanted to give an update on Amos’ progress. We continue to rejoice over the wonderful MRI result from this morning, which is clear and “beautiful” as our neurosurgeon said. Thank you for your prayers on Amos’ behalf!

As we mentioned this morning, the plan was to take Amos off sedation and wake him up. Without a strong cough and gag reflex, the team here did this very slowly and carefully. By noon, Amos came all the way off sedation today for about an hour, but kept his ventilation tube in, to see how he handled it. He did a good job, and was responsive, but since it was later in the day than the doctors wanted they decided to sedate him again for more rest and food until the morning. At about 3:30pm Amos had another seizure, much like last Saturday’s, which was short and quickly resolved. The doctors have told us that with two brain surgeries, the periodic fevers and seizures are not that surprising, although they are certainly frightening for Kelli and me.

Amos is now resting and on an anti-seizure medication. He will hopefully have an EEG tonight to determine just what kind of seizure activity is going on, and to prepare for him coming off the ventilation tomorrow morning, which remains the plan. Amos’ respiratory nurse told us today that he is coughing to a limited extent, which is very good, but he’ll need to continue strengthening that ability to stay off a ventilator.

Please continue praying for Amos. Pray that the doctors would analyse the seizure activity correctly and be able to avoid any further episodes. Pray especially that Amos would rest well tonight and that his gag and cough reflex would return fully and forcefully tonight. Pray that tomorrow morning’s removal of the air-tube goes perfectly, that he can breathe strongly on his own, and can remain awake moving forward. Finally, continue to pray that the pathology shows a benign tumor and that treatment moving forward is clear and manageable.

We thank you for your tireless prayer for our Amos, and for us.

“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10

In His strength,

Will, Kelli, Amos, and Luke

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July 3

Friday 7/3 Amos Update #7

Hi Friends,

Thanks for your faithful prayer. Amos is not going to be taken off of the breathing tube and sedation today. He’s still experiencing some seizure activity so the doctors have decided they need more information on that before moving forward. As we said yesterday in the update, no one seems very concerned or surprised that he’s having seizures and that is a comfort even though they are scary to us. Our neurosurgeon is most confident on this point.

Once again, the plan is to hold him steady for today- get some more test results back today- and try to extubate tomorrow (remove the breathing tube). We covet your prayers for Amos, his doctors, and for us as we wait.

“You Fearful saints, fresh courage take; the clouds you so much dread are big with mercy and shall break in blessings on your head.”
-William Cowper, 1731

Kelli, Will, Amos, and Luke

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July 4

Saturday 7/4 Amos Update #8
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To our Family and Friends,

William Ross's photo.Today is bitter-sweet for us in many ways. Not only is it a holiday that we thought would be spent in a much different way, but as many of you know today is also Luke’s 1st birthday. We are amazed and thankful for the Lord’s goodness to us this past year, and we love our little Lucas so much, and are so glad for all the vim and vigour he brings to our lives. He is, as his Grandpa Scott calls him, our “joy boy.” Happy birthday, Lucas! (Picture attached from our party in the hospital courtyard)

Thank you for praying with us these many days. We ask you to continue to endure with us interceding for Amos. The last twenty-four hours or more have been mostly ones of waiting and praying. Amos is still sedated, and has undergone several tests to check his brain, his heart, his blood, and so forth. We were very thankful to hear this morning from one of the neurosurgeons that the EEG (brain monitor) he has been wearing for the past 24 hours has shown that there is actually no seizure activity at all. This is great news, and is consistent with what our main neurosurgeon suspected since the area of operation is not associated with seizures. A second doctor also confirmed this tonight. His occasional shaking is probably having to do with swelling and recovery from the operations, or fevers, which is unsurprising. Praise God for this good news about the (lack of) seizures. His echo cardiogram from yesterday also came back with good, normal results, which is very good.

At this point, we are holding steady until at least Monday before we wake Amos up. The primary concern here is that he is well-rested and able to remain off the ventilator without complication, so they are being very thorough before beginning that process. Right now it is looking like Amos will need a tracheostomy, which is a temporary breathing tube in his throat, due to his lack of cough and gag reflex. This is still uncertain and we have more to hear from the doctors on this point, who may decide instead to attempt to extubate him again once more (remove the breathing tube). Also, with the holiday weekend, the pathology results have not come back, and may not for another few days.

Please pray:

– That Amos’ body would continue to strengthen and heal, and that we would see definitive progress and improvement. Today was very encouraging on this front as God answered this request; pray for continued improvement.
– That Amos’ gag and cough reflex would continue to return before Monday – there have been good signs that this is happening, but there is still lots of room for improvement
– That Amos’ lungs would be strong and free of secretions (gunk), that his operation site would heal, and that the swelling would subside in his brain
– That the doctors would determine how to best address Amos’ fluctuating blood pressure, which thankfully has taken a big turn for the better today on different medication
– That Amos would be able to wake up and have his breathing tube removed soon, and without any complication, so he can get up and about
– That the doctors (and we) would make a wise decision regarding the tracheostomy
– That the pathology would return benign, and that his ongoing treatment and recovery are manageable and clearly directed
– That Kelli and I would have strength and peace during these days of waiting and what feels like unending repetition in prayer.

But he knows the way that I take; when he has tried me, I shall come out as gold. Job 23:10

Through Christ the King,

Will, Kelli, Amos, and the birthday boy Luke

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July 5

Sunday 7/5 Amos Update #9
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Hi Dear Friends and Family,

We continue to be thankful for all of you – both far and near. We are particularly thankful today for the promise of a full and perfect Sabbath rest. There’s nothing quite like being in the Pediatric Intensive Care Unit to make you long for heaven. God bless the amazing people who work here every day! And may the Lord hold close His little lambs who are hurting.

Our update on Amos today is much the same as yesterday. He had a good, stable day today (and even had a good bowel movement – little victories!). We look forward with nervous anticipation to a week of decisions and hopefully great progress for Amos – starting tomorrow. He is currently still sedated, on the breathing tube, and doing well. The most immediate challenge is to get him awake and breathing on his own, and even up and about. The idea is for this to happen in the next several days. Here are some specific prayer requests as we look ahead:

1. Please pray that Amos’ cough and gag reflex will return soon (by tomorrow!!).
2. Please pray that if Amos’ cough and gag reflex doesn’t return, that there will be a clear consensus among the doctors regarding the decision to do a tracheostomy and that we would be at peace.
3. Continue to pray that pathology would reveal the tumor is completely benign.
4. Pray that Amos’ lungs would continue to be strong and healthy.
5. Please pray that Amos would be protected from any further infections (he’s on two antibiotics for something already).
6. Please pray that when Amos does wake up and come off of the sedation, that we would be strong in the face of a potentially difficult withdrawal period for Amos.
7. Please pray for his care-givers, that the Lord would bless them and their kindness towards Amos and continue to give them wisdom and strength.

Please also pray for Will and I as we adjust to whatever our new normal is going to be. Pray that we can draw near to the Lord and one another when the road ahead seems foggy or even not there at all. Pray that we would trust the Lord to give us “manna” enough for each day. Pray that we would trust him to give us all that we need for each day and not worry about tomorrow. All very tough things right now.

And thank you for the “Happy Birthday” wishes for Luke! It was a comfort to celebrate him yesterday – and to see him chow down on his chocolate cake.

Yet this I call to mind and therefore I have hope: 22 Because of the Lord’s great love we are not consumed, for his compassions never fail. 23 They are new every morning; great is your faithfulness. 24 I say to myself, “The Lord is my portion; therefore I will wait for him.” Lam. 3:21-24

Much love,
Will, Kelli, Amos, and Luke

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July 6

Monday 7/6 Amos Update #10
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Dear Family and Friends,

Tonight is Monday night and it was a good day. Thank you, thank you for your sustained prayer for our son Amos. We need all of God’s people pleading together to give us all strength for each day.

Once more, there is not much to report in terms of big changes made, but at this point stability is a great thing as well. Amos had a very even-keeled night last night, as well as all day today. His blood pressure is very even, and all his other stats are in a good place as well. His fevers have been under control, and the antibiotics seem to be doing a good job. Overall, he has been resting comfortably now, and getting nutrition, for the last two days or so, and that is very good. We praise God for all this. The respiratory therapists that Amos has had over the last 48 hours have each said in some way or another that they believe he may be “coughing” in a minor way. Not outright or with much strength, but internally. This is really good news, but still not where it needs to be in a best-case scenario. Pray for improvement!

The doctors plan to extubate Amos early tomorrow morning (~8am PST), meaning dial back his sedatives and, once he is awake, remove his breathing tube. When they do that, they will look down his throat with a little probe to see whether his vocal chords are doing their job, which will help determine whether he can handle breathing without a tube in. Lord willing, Amos will do well and be able to remain off the breathing tube and awake indefinitely. That is our hope and prayer tonight. If he runs into difficulty or the doctors don’t think he’ll be able to sustain his airways without a strong enough cough, they will probably re-intubate him (replace the air tube), sedate him for another night or so, and do the tracheostomy on Wednesday. Kelli and I will likely get more information about that tomorrow as the day develops. Also, our oncologists told us today that we can (potentially) expect results on Thursday. As you can tell, deadlines are quite fluid in the PICU.

Please pray:

– For Amos to rest well and regain a lot of strength tonight.
– For Amos’ cough and gag reflex to really be present in the morning in new ways.
– For the extubation to go extremely well, and for his vocal chords and airways to be functioning very well.
– For Kelli and I to have courage and peace as we face the day’s uncertainties.
– For wisdom as we and the doctors determine whether the tracheostomy is necessary.
– That the pathology would return totally benign.
– For the Lord’s comfort and assurance in this important week of progress for Amos.

Thank you friends. We will write again tomorrow with how things go.

For God alone, O my soul, wait in silence, for my hope is from him; He only is my rock and my salvation, my fortress; I shall not be shaken. Ps. 62:5-6

Love,

Will, Kelli, Amos, and Luke

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July 7

Tuesday 7/7 Amos Update #11
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To our Friends and Family,

One thing we are learning in all of this is to not set our hearts on any particular time-frame other than the Lord’s. So the slightly disappointing news is that Amos was not extubated today – the process never even began. The good news, however, is that the reason for this change in plans is mostly logistical (a nurse “fumble” as Will called it), and Amos continues to do well just like the last two days. We continue to hear encouraging words from the doctors and we are hopeful that tomorrow morning, Lord willing, we will get Amos off of the breathing tube and awake. That is the old new plan.

Please pray that all of the many factors involved in this process will be all lined up and in perfect place come tomorrow morning, with great success. Please also continue to pray that Amos will extubate successfully and breath on his own, with a strong cough and good breathing. That would be an amazing blessing right now. We are mentally and spiritually prepared for the tracheostomy, if case he doesn’t handle extubation appropriately, but we would love to skip it for Amos’ sake and for ours.

We are thankful and encouraged that Amos continues to do quite well in any case. His infection and low fevers seem to be in check and there little that anyone is worried about from what we can tell. He’s responsive and moving all his parts at his more wakeful times and these are all good signs. His blood pressure continues to be tricky but the doctors are fairly certain that he’s just responding to all of the different medicines that he’s been on now for quite some time.

Thank you for praying. Please continue to pray for these specifics:

1. That the pathology results would reveal a completely benign tumor (Due Thursday).
2. That the extubation tomorrow would be a success and that Amos’ cough and gag reflexes would be present to protect his airway.
3. That we would not have to get a tracheostomy.
4. That Amos would continue to show improvement and strength in all areas.
5. For his caregivers to be wise and vigilant tonight, and that the Lord would bless them. (So many of them can’t wait to meet Amos once he wakes up!)
6. For Will and I to be patient and to know how to focus our energies during this time of waiting and as we look ahead to what the rest of recovery looks like for Amos.

You keep him in perfect peace whose mind is stayed upon you, because he trusts in you. Isaiah 26:3

Love in Christ our King,

Kelli, Will, Amos, and Lucas

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July 8

Wednesday 7/8 Amos Update #12
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To our Family and Friends,

Today was a tumultuous day in many ways. For that reason we were all the more comforted and encouraged by your prayers as the day unfolded. We constantly thank the Lord for you.

As we explained yesterday, Amos was scheduled for extubation this morning (having his breathing tube removed) to see whether and how he would breathe on his own considering the lack of gag and cough reflex. This morning he was breathing well and fairly consistently without the aid of the ventilator, and showing all the right numbers to go through this “test.” At about 11 o’clock the doctors, all ready to intervene if necessary, removed the breathing tube. Ultimately, however, Amos was not able to remain extubated, as his gag and cough reflex had not sufficiently revived, and his airway was still too obstructed, which we later found out was due to scarring from the tube itself. He went for about an hour, closely monitored, but was obviously breathing with significant difficulty. It was a very hard experience for us to see him struggle, even though the doctors, and ultimately the Lord Himself, were always in sure control.

Again, as expected, the next step was to give Amos a tracheostomy, which happened tonight around 8:30pm PST. The procedure went flawlessly. Amos looks much more comfortable now. His blood pressure is way down, and he is breathing great entirely on his own. We are very relieved and thankful for more expert surgeons here! What the “trach” (pronounced like “lake”) does is provide him an airway at the front base of his neck, which bypasses the part of his throat where his breathing is obstructed. With it he can breathe normally as well as eat, speak, and other normal activities, in due time. If you can imagine a white soda bottle cap strapped around his neck near where a tie knot goes, that is more or less what it looks like. At this point, we have good reason to expect the trach to be temporary, until the gag and cough reflex returns more fully. Most of the doctors expect this to happen, although we do not know when.

Please pray:

– That Amos would be much more comfortable and at ease with this new trach
– That Amos will be able to successfully wean off the sedatives and other drugs that he has been on for over ten days now, with little negative withdrawal effects
– That the coming week would allow Amos, and us, to adjust well to the trach
– That physical and occupational therapy would begin in the next few days and have great results, wherever Amos has to “start from”
– That the pathology would return in the next day or two and would show benign results
– That the doctors would work together towards a successful discharge for Amos in the next week or two

We love each of you for loving our son so faithfully through prayer.

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. John 14:27

Will, Kelli, Amos, and Lucas

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July 9

Thursday 7/9 Amos Update #13
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Our dear friends and family,

Amos had a good day today. The tracheostomy is clearly helping in many ways, even though the site is sore and causing Amos some discomfort. In another day or two it should be healed well enough to feel more “normal.” Amos continues to breathe well all on his own, and he has come down slowly on his sedation medication. By slowly, we mean that it will probably take the next three or four days for it to be entirely gone. Again, this is due to the withdrawal that accompanies the medication he has been on for many days now, a medication in the same “family” as heroin (according to our nurse). So it has to go slow. He is not very responsive still, but he is more wakeful and we have been talking with him much more even as he continues to rest.

Our pathology results finally came back this morning. It is cancer. We are overwhelmed, and are having a difficult time determining how to feel. Our neurosurgeon who performed the operations told us several days ago what sort of tumor he though it was, so Kelli and I have basically been assuming he was right – even as we prayed fervently otherwise. Hearing the news officially that he was, in fact, correct is still a tremendous blow. At the same time, we know that the huge step of removing the tumor is behind us. Considering that Amos has had this cancer since the day of his birth, in the most upside-down way, he is in fact more healthy today than he ever has been. And for that we praise the Lord. But the way ahead is long and difficult.

Please pray for Amos:

– That Amos would continue to recover and his body strengthen
– That he would wean off his sedatives extremely well and with minimal side effects
– That his vocal chords, and his gag and cough reflex would quickly recover in full
– That his trach would heal well, that he would be in minimal discomfort, and able to discharge in about a week
– That as we meet with many doctors over the next few days it would be perfectly clear which course of treatment will be best for Amos
– That we would make wise choices regarding when to return to Cambridge
– That even now the Lord would have a plan for Amos’ full recovery and long-term health firmly in place

We thank you. Persevere with us – and even at certain moments for us – in hope and trust in the Lord. May we wait for his goodness and mercy even when our hearts are completely overwhelmed.

“I wait for the Lord, my soul waits, and in his word I hope; my soul waits for the Lord more than those who watch for the morning, more than those who watch for the morning.” Ps. 130:5-6

In the name of the King,

Will, Kelli, Amos, and Lucas

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July 10

Friday 7/10 Amos Update #14
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To our family and friends,

Today was a much more even day for Amos and for us. In fact, we don’t really have much to add today, which is probably good. It was a lot of conversation with oncologists and radiologists and pulmonologists and other -ologists. Overall, it was helpful and actually encouraging in some ways. Although there are still many questions to answer definitively about the next phase of all of this, things are beginning to become clearer. We will probably wait until these open items are more fully settled to say more, but it is fairly certain that we will be in California for at least the next six to eight weeks.

Amos had a good day today. He continues to wean off his many medications, and that is a difficult and slow process as we mentioned. There is a fairly rigorous “scoring” system to determine how best to help him off all the drugs, so it is going as smoothly as possible. Amos was slightly more responsive today, moving about more than yesterday, and lightly squeezing hands when asked, but not much else. He is in quite a haze until everything is out of his system, and even then it remains to be seen how much recovery and therapy he will face.

Please pray:

– That Amos would continue to heal and strengthen over the next week, particularly his trach
– That he would have great success weaning off his sedatives and many other drugs
– That Amos’ inter-cranial pressure (ICP) would be very stable and ultimately self-governing so that he can have his head drain removed in the next few days (did you know that your brain has a drainage system? It does)
– That Amos’s vocal chords, cough and gag reflex, and so on would all return in full soon
– That we would ask the right questions and make the right decisions regarding Amos’ treatment options, particularly with the timing involved in our pending move back to Cambridge
– That the Lord would be glorified in each stage of Amos’ recovery

Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth! Ps. 46:10

Love in Christ,

Will, Kelli, Amos and Lucas

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July 11

Saturday 7/11 Amos Update #15
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Dear Friends,

Thank you for your continued encouragement and prayers. We feel surrounded and strengthened by your outpouring of love and encouragement to us and for Amos during this time. Amos is continuing to do well. He’s being weaned off of his medications slowly and we are waiting to see how he responds once he’s drug-free. As of 8pm PST tonight he is completely off the major sedation drug he’s been on.

Please continue to pray…
– That Amos will wean off of all of his meds well and that he will come out of all the sedation awake and alert.
– That Amos’ body and brain would continue to heal from all that he’s endured these past two weeks.
– That Amos’ cough and gag and vocal chords would return soon.
– That his trach would heal well and that we would learn to care for it for as long as it’s necessary
– That Amos would be able to be discharged in the next week or so.a
– For wisdom for Will and I as we made plans for cancer treatment.
– For wisdom as we discuss and make plans for what this next year of our life will look like.

For today’s update, since we have little news to report on Amos, I thought I’d share something that’s encouraged us. Today we got a pretty distinct smile from Amos. A first since this all began. Will and I were reading to him from the Jesus Story Book Bible (a family favorite!) and we were reading the story of Jesus calming the storm on the Sea of Galilee. When Jesus wakes up, his disciples are afraid and begging him to save them and he calms the storm. The JSB says is like this,

Jesus stood up and spoke to the storm. “Hush!” he said. That’s all. And the strangest thing happened….
The wind and the waves recognized Jesus’ voice. (They had heard it before, of course – it was the same voice that made them, in the very beginning.) They listened to Jesus and they did what he said.
Immediately the wind stopped. The water calmed down. It glittered innocently in the moonlight and lapped quietly against the side of the boat, as if nothing had happened.
The little boat bobbed gently up and down. There was a deep stillness and a great quiet all around.
Then Jesus turned to his wind-torn friends. “Why were you scared?” he asked. “Did you forget who I Am? Did you believe your fears instead of me?”

-JSB, page 242

What a sweet gift for today. Our hearts have been and continue to be frightened at times. We forget who He is. But we also remember. And Amos remembers too.

Thanking God for all of you,

Kelli, Will, Amos, and Luke

 __________________________________________________________________July 12Sunday, July 12 Update #16
Share FreelyDear Friends,

It’s getting late here and I’m just now thinking about an update. Today has been full and not bad. That last part is certainly something to be thankful for! Amos is doing well- thank you for your continued prayers on his behalf. Today he was fully off the “big hitters” of his sedation meds. He’s still on a few things that make him calm and sleepy but the weaning process is well underway and Amos seemed more comfortable and less agitated today than he’s been in a while. Definitely something else to be thankful for!

He also seemed to be listening and comprehending some of what we were saying to him. Let’s just say that there were some tears of joy! He smiled while reading some Bible stories and also as we talked about the zoo, trains, Cambridge, Luke, and some other of his favorite things. These tiny smiles of recognition give so much hope to our hearts.

The road ahead for Amos still is somewhat unclear and so we ask for continued prayer. Please pray…

-That Amos would make amazing strides in his recovery this week. That he would especially regain his cough and gag reflex as well as the use of his vocal chords.
– That Amos would pass the EVD test that he’s in the midst of to determine whether or not he’ll need a shunt to help him regulate the fluid in his brain.
– That Amos would be at peace and rest well even while he’s still here in the PICU (a place with lots of beeps and disturbances despite best efforts by all).
-That the Lord would give Will and I wisdom as we make plans for Amos’ cancer treatment going forward.
-For Amos’ caregivers to be wise and skillful and for us to have opportunities to witness to them.

Please also continue to pray for our whole family as we struggle to know what is next and when, where, and how everything will unfold. Please pray for wisdom and that we would be able to trust the Lord in all that is unknown as we take it one day at a time and try not to grow impatient. May we also treasure each little tiny victory and may these sustain us for the days to come.

See, the Sovereign Lord comes with power,
and he rules with a mighty arm.
See, his reward is with him,
and his recompense accompanies him.
11 He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young. Isaiah 40:10-11

__________________________________________________________________July 13

Monday 7/13 Amos Update #17 and Fundraiser
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Dear Friends and Family,

We thank you for your continued prayers for our son, Amos. Mondays are busy here at CHOC as all the doctors come back in full swing. We spent a good deal of time today talking with doctors new and old about the plan for the next week. Amos continues in much the same condition, and was very drowsy today, sleeping quite a lot. Last night his brain fluid drain was clamped to see how he would manage the internal pressure on his own, and it may be that that has made him drowsy. The clamp is now open again for the night to see how we will proceed tomorrow.

Tomorrow morning at 6am PST Amos will go across the street to another building to have all his preparations to begin radiation treatment. Essentially the doctors will map the area where they wish to radiate and create a 3-D model of where the tumor was to make the most accurate treatment plan. With the physics and math involved it will probably be a week before Amos actually begins the treatment. This will be every day, Monday to Friday, for six weeks. During that time, Amos will also receive physical and occupational therapy, plus speech therapy, to help with rehabilitation. At some point, he will transition out of the PICU into another unit here at CHOC, and then, in due time, back home to Kelli’s parent’s house here in California. It will be a slow process, and require patience and endurance for all of us.

Many of you have been so kind in the ways you have shown us support other than your devoted prayer. The cards, gifts, and personal messages have meant so much to us, and so many have asked how else you can help. We have decided to set up a fundraiser so that, if you are able and would like to, you can donate towards the financial costs that our family is facing in the next year. See our information on this below:

There are two ways to donate. Please feel free to forward this to anyone you think may be interested:

1) Online via youcaring.com, which accepts credit and debit card payments. Please Click Here to view their personal site.

2) Donation by personal check through Cresheim Valley Church. Please write “Family Medical Fund” in the For: line on the check, and send it to Cresheim Valley Church, P.O. Box 4030, Chestnut Hill, PA 19118.

In addition, you can continue to pray:

– That Amos would revive completely from his sedation medications as they clear his system, and that his body and mind would grow steadily stronger
– That his vocal chords, and cough and gag reflex would return fully and soon
– That tomorrow morning’s consultation would go extremely well, and that the radiologists would have perfect accuracy as they create Amos’ treatment models
– That radiation treatment would begin soon and be totally effective
– That we would have wisdom and discretion as we weigh plans for the next three to six months of our lives
– That Amos, ultimately, would be completely cancer-free following his treatments, and return to health as soon as the Lord wills

Let the treasures of the trial form within me as I go;
And at the end of this long passage, let me leave them at your throne.

With love in Christ,

Will, Kelli, Amos, and Lucas

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July 14

Tuesday 7/14 Amos Update #18
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Dear Friends,

Words cannot express the encouragement that we feel from the continued love and almost instant financial support that you’ve all shown. We are thankful to the Lord for blessing us with such faithful and generous friends- and friends of friends -through the body of Christ. We know we can’t say thank you enough and also that we’ve missed some along the way. Please know that we are overwhelmed with gratitude even when we can’t find the time or brain cells to thank you directly. For all the cards, emails, gifts, or a meal- Thank you. We know we can’t do this alone and thanks to all of you and the Lord Jesus, we know that we are not alone and that Amos is not alone.

Today has been filled with ups and downs and some disappointment too. The good news is that Amos woke up a bit more for a brief period. We were able to see more smiles and feel like he was really able to listen and comprehend some of the things we were saying to him. He got an early morning ride across the street in the ambulance this morning for his radiation mapping scan and that went well.

Unfortunately, we heard later today that his scans will have to be repeated next week in order for them to get a more accurate plan for his radiation treatment. The reason for that involves the EVD test that he’s been doing the last few days. So in case you don’t know, Amos has had an external device in his head that helps keep his brain fluid levels draining properly. The hope was that with the tumor out, his brain fluid would drain well, on it’s own eventually. The EVD test that he’s been doing was trying to determine if his brain was draining well enough on it’s own to be able to remove the EVD. The short story is that he’s not been able to drain the fluid on his own and tomorrow he’ll be going into surgery for a shunt. This will be an internal drain from his brain to his stomach area that will help him drain the fluid. This may be a permanent feature or a temporary one. We just can’t know right now. What we do know is that he needs it. Increased pressure in the brain is hopefully what’s been contributing to Amos’ extremely sleepy state. It’s upsetting to think of him having another surgery but it’s what he needs.

Additionally, the need for a shunt and the need to bring down the pressure in his brain will push back our ability to start radiation by one week. This is not what we wanted but we know that the Lord has the timing of all of this worked out perfectly. We know that He brought us here and allowed all of this to transpire with our precious Amos exactly at this time and in this way. Please pray that this extra week of recovery for Amos in between his brain surgeries and radiation would be a tremendous time of progress for Amos and that we would clearly see the Lord’s hand in setting things back a week.

Please pray:

– That surgery would go well tomorrow for the placement of a shunt. Please pray specifically that there would be no infection as he heals.

– That the Doctors would continue to exhibit great care and wisdom as they watch over Amos and make decisions about all the different aspects of his needs.

– For Amos to make great strides in recovery these next several days- for his cough and gag reflex as well as his vocal chords and all other faculties to return in amazing ways.

– For Will and I as we continue to make decisions and plans for radiation for Amos. That we would be patient as well!!

– For the Lord to give us undeniable reminders of his goodness and love for Amos each day- and that we would see them and be encouraged.

– For special wisdom for Will and I as we navigate and advocate for Amos in the midst of all of these experts. That the Lord would give us the questions to ask and the concerns to raise. That we would be tirelessly vigilant.

We’ve been playing “Amos’ music” in the hospital room and it’s been a huge blessing to me to hear the words of the songs that he knows and loves. We love Rain for Roots music and one of the songs is called “Jesus is Alive.” These simple words have been a huge comfort to me and a reminder of the One who came to rescue us and win it all. He already beat death – the greatest enemy that Amos and all of us will ever face.

“Who died, but came alive again? Who came to rescue you and win? Who came to make all things brand new Who did it all for love of you? Who did this all for love of you? So sing and dance and leap and run His name is Jesus, little one.” (Listen here)

“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.” John 16:33

Thankful for His love and for you all,
Kelli, Will, Amos, and Lucas

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July 15 Morning

Amos goes into surgery for his shunt at 3pm PST (so in about 30 minutes!). Please pray for the doctors to do a perfect job and for everything to go well. Please also pray that Amos would be at peace and that he would not be afraid!

“Have I not commanded you? Be strong and courageous. Do not be afraid, and do not be dismayed, for the LORD your God is with you wherever you go.” Joshua 1:9

July 15 Evening

 Wednesday July 15th Amos Update #19Share FreelyTo our friends and family,Another day has come and gone, and we have continued to witness the Lord’s good hand upon our family. This morning we were greeted by a more wakeful and responsive Amos, who even gave us a few more of his mild smiles that are such a joy to see. He is certainly listening and aware now that his intracranial pressure issues were addressed, so we are hopeful that we will see more steady progress with that more permanently managed. As you know from our email last night, Amos had another procedure this afternoon to remove his draining device and put in a shunt, which is an internal tube running from his brain to his tummy. This allows his brain fluid to drain out easily if it ever builds up too much, like the hole at the top of your bathroom sink, and be absorbed by his body. Thank you so much for your prayers during that surgery – it went perfectly well and Amos is now resting comfortably with one less tube, and one less number on his vital sign monitor (and one less beep to deal with). So we are thankful to have that hurtle behind us.

Tomorrow morning Amos will have another procedure, this one even less complicated than today’s. This one is to replace his nasal feeding tube with a more stable and semi-permanent stomach feeding tube (which is apparently called a mickey button). The doctor doing that procedure told us he has done it many times, and in as little as four minutes. It will allow Amos to get all the right nutrients and medicine directly, regardless of whether he feels like eating. At this point that operation will happen around 2pm PST tomorrow. After that, Lord willing, Amos will be finished with invasive procedures for the foreseeable future.

Please pray:

– That Amos will recover well from his shunt surgery today, with minimal discomfort at the incision sites
– That there would be no infections or problems of any sort with Amos’ shunt in the coming days, weeks, and even months
– That Amos’ intracranial pressure would be perfectly balanced, and that he would significantly improve in his energy, responsiveness, and strength
– That Amos’ internal swelling at his operation sites, his cough and gag reflex, and his vocal chords, would continue to heal and strengthen
– That tomorrow’s stomach tube procedure would go flawlessly and be another helpful step for Amos
– That Kelli and I would make the best decisions for Amos’ ongoing treatment, specifically radiation, and that the doctors would do an excellent job creating and executing it
– That, ultimately, Amos would finish his treatment cancer-free for the long-run

Again and again, we thank you for your sustained and faithful prayer for our son. Let’s continue bringing Amos before the throne together. I can only repeat Kelli’s thanks for the financial support we have received, and so quickly. We are truly honored by your compassion, support, and your dedication in prayer, dear friends.

“Know therefore that the LORD your God is God, the faithful God who keeps covenant and steadfast love with those who love him and keep his commandments, to a thousand generations” Deut. 7:9

Love in Christ,

Will, Kelli, Amos, and Lucas

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July 16

Amos Update #19 – Thursday July 16
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Dear Friends,

Today was a hard but good day. Amos endured what we hope and pray will be his last surgery for a while at least. He did well and the doctor said the procedure went perfectly. Praise the Lord! We are so relieved. Thank you for your faithful prayers.

We continue to feel like so many of you are bearing this burden with us and we cannot tell you how much it strengthens us to know of your love, prayers, and shared tears. And of the love and prayers of so many of your friends and family who we do not know. We are humbled and amazed by the love of Christ through all of you. What a blessing to know that we serve a God who hears the prayers of His people.

Amos had a tough day recovering from yesterday’s shunt operation and preparing for today’s operation to insert a feeding tube into his stomach. A “G tube” is what they called it. It was a very simple and straightforward surgery that went well. However, it’s painfully apparent that Amos is not enjoying things at this point and we are so sorry to see him become more aware of his suffering. We can only ask for grace and mercy as we parent him through this trial. We long to take away his burden but know that Jesus holds him so close right now.

Please continue to pray:

-That Amos would heal perfectly from this week’s operations. That there would be no infections or complications.
-That Amos would be brave, patient, and trusting as he realizes more of what he’s going through. That he would not remember the painful moments but that he would know the peace and presence of the Lord in all of this.
-That we would continue to receive wise counsel regarding Amos’ ongoing plan of care.
-That Amos would make tremendous strides in recovering his cough and gag, vocal chords, and all of his reflexes and motor skills.
-That we would be patient as we wait on the Lord and trust in His good plan for our family and for our future.
-That this weekend would be restful as Amos has nothing scheduled. May he and we rest well.

One of the ways that the Lord continues to encourage us is through the staff at CHOC. Seriously you guys. So many of them are believers and we feel like the Lord keeps bringing them literally each day to encourage us and remind us of His presence here. Today, the nurse in training who was shadowing Amos’ nurse left us a note saying that she was praying for Amos and that he had reminded her of this verse,

“No, in all these things we are more than conquerors through him who loved us.” Romans 8:37

We continue to thank the Lord for his people who surround us and uphold us in so many surprising ways.

Love to you all,

Kelli, Will, Amos, and Luke

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July 17

Friday July 17th Amos Update #21
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Dear Family and Friends,

Just a brief update from us today. We are tired but thankful.

The biggest news from today is that we moved from the Pediatric Intensive Care Unit to the oncology floor. It’s a strange milestone to reach and stranger yet to feel like it’s one worth celebrating. Although the past three weeks in intensive care have been so difficult to endure, we are comforted by the simple things that remind us to hope.

William Ross's photo.One has been the view from our PICU room, which we am sorry to say goodbye to. This view of the mountains has been such a comfort. Everyone would always tell us that we had the best view in the whole PICU. So in the midst of all the horrors of all the seemingly endless days and nights (23 to be exact), we’ve had this view to remind us as the sun rose each morning over those hills that the Lord’s mercies are new each day – Great is His faithfulness (Lam 3:22-23).

The second is seeing Amos continue to have moments of clarity and peace. Today he smiled at familiar songs and stories. We cherish each of these glimpses of our sweet boy and trust that each day will bring new signs of progress from him.

Please continue to pray for Amos to heal well and grow stronger, for no infections, and for all of his abilities to be restored in significant steps even this week before radiation begins. Also pray for this time of healing to be as peaceful as possible for Amos. As he grows more aware, he’s often upset when a nurse or doctor walks into the room and that is hard for us to see. Please pray that we would help him find ways to be strong in the midst of all of this confusion and pain. And, as always, continue to pray that all of his treatment would be completely effective for the long run.

“I lift my eyes up to the mountains, from where shall my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2

In Christ,

Will, Kelli, Amos, and Luke

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July 18

Saturday July 18th Amos Update #22
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To our Friends and Family,

Once again, we are thankful for your prayers. Each day brings its own challenges and victories, and our knowledge that we are lifted up to the Lord by all of you makes an incredible difference to us as we wait on Him.

Today was Amos’ first whole day out of the pediatric ICU since this all began just over three weeks ago. We are now one level down on the oncology floor, and will be here until Amos is discharged fully. Amos has been able to rest after this past week’s procedures, which is great. He seemed much more comfortable today than yesterday, and has been napping and listening to music or stories. He is still giving us little smiles from time to time, and also clearly communicating with facial expressions when he is upset or in pain. Tomorrow will be another quiet day, and on Monday he will have his radiation treatment plan re-mapped. The idea is to begin radiation by the end of this coming week, or sooner. That will start his six-week schedule, and at some point in there, Lord willing, he will be discharged to come “home” to Kelli’s parents’ house.

Please pray:

– That Amos would continue to heal, rest, and strengthen from his surgeries this past week
– That Amos’ vocal chords, his cough and gag reflex, and other faculties would continue to improve, and that we would see great progress each day this week
– That the radiation mapping on Monday would be done excellently and in a timely manner
– That Amos’ radiation treatment would begin this coming week, and that ultimately it would be completely effective and eradicate any remaining cancerous cells, and have minimal negative side-effects
– That Amos would know how deeply the Lord loves him, as well as us and all of you who are praying daily

God is our refuge and strength, A very present help in trouble. (Ps. 46:1)

Love in Christ,

Will, Kelli, Amos, and Luke

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July 19

Sunday July 19th Amos Update #23

Dear family and friends,

We are so pleased to share that Amos has made more progress today in his recovery. Although the steps he makes are ever so minimal, under our current circumstances we are amazed at how tremendous they are to us, and what a wonderful reminder it is of God’s faithfulness to his people. Thank you for praying for Amos.

The good thing about being out of the ICU is that it is much quieter and less involved. Kelli and I have more of an opportunity to do Amos’ care ourselves, which we really enjoy. He is much calmer and able to rest now, which is very helpful to all of us. Today, like the past few days, Amos continued to dispense smiles at storybooks, pictures, and Facetime with his little brother Luke. This morning, Amos also was able to lift his head up all the way for a moment while lying on his side. He was also able to visually track one of his favorite toys from Grandpa Scott, and seemed to be moving his hands and arms around with more purpose.

While Amos is now almost completely off all medication, the doctors believe he may be suffering from a syndrome that sometimes occurs in children who undergo surgeries like Amos has done. It is quite unquantifiable, but basically makes the patient mentally and physically sluggish and irritable. It is difficult to parse out what is what at this point, but some of Amos’ slow recovery may be attributable to this syndrome along with the drug withdrawal and continued recovery from brain swelling. Amidst all these possibilities, the minor steps are so encouraging to us. The further he can make it along before radiation begins, the better.

Please pray:

– That Amos would continue to recover his strength, reflexes, and mechanical skills in significant steps each day
– That he would continue to be free from infections
– That his radiation mapping tomorrow would go extremely well and set him up for a fully effective and successful treatment
– That radiation would begin this week, and that Amos would make sufficient progress to be discharged in the near future
– That, in the long run, Amos would be and remain totally cancer free

Tonight Kelli and I were discussing how amazed we are by God’s goodness. Back around Christmas we found a children’s catechism that we started using with Amos on a whim, and with only so much diligence. By June, Amos knew over thirty questions by heart, along with several scripture verses. We are incredibly thankful to know that Amos knows these eternal truths by heart.

Q: Who made you?
A: God.
Q: What else did God make?
A: God made all things.
Q: Why did God make you and all things?
A: For his own glory.

In Christ,

Will, Kelli, Amos, and Lucas

__________________________________________________________________

July 20

Monday July 20th Amos Update #24
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Dear Family and Friends,

Today was another busy Monday with lots of good things. One of the best parts was waking up at home together after a great night’s rest. Kelli and I both took a night “off” last night, headed back to Dana Point for dinner out, and spent the night at home while Gigi stayed overnight with Amos. Since the beginning of last week Kelli and I have been switching every day who stays in the hospital with Amos, so it was wonderful to both get a break at once.

Amos did not get his radiation mapping today. It will happen tomorrow morning at 7am PST, and should put Amos on course for beginning treatment at the start of next week. What was a nice change, however, was the beginning of physical and occupational therapy for Amos. This is something he will receive every day moving forward, and we were glad to see how much he enjoyed it. Two very nice ladies spent time playing with Amos, moving him about, exercising and rubbing his muscles, and so on. He was able to track a bit with his eyes, move his mouth some, and turn his head to follow a toy. He also got to sit up cross-legged for a while and have help playing a toy piano, which, being a “music man” to begin with, made Amos very happy! We are thankful for the signs of continued progress each day.

As Kelli and I have begun to contemplate the long-term scenarios that Amos faces, we thought that setting up a blog would be a good option to stay in touch. For the time being, we plan to continue our daily email and Facebook updates as usual. But in the meantime you can viewwww.AmosRossUpdates.com to see where we will be moving things in due time. If you want, you can sign up to receive an email directly from the site every time we post an update there, when we begin to do so. This will replace our email and Facebook updates eventually but keep the basic infrastructure of regular contact with Amos’ prayer community, put right in your inbox/newsfeed.

Please pray:

– That Amos would continue to strengthen, and that his physical and occupational therapy would help him make great strides each day
– That tomorrow morning’s radiation mapping would go extremely well and set the stage for fully effective treatment
– That Amos’ post-surgery syndrome would pass quickly
– That Amos, as he becomes more aware of his situation, would trust his doctors and be thankful and calm when they come to do any number of tasks for him
– That Amos’ cough and gag reflex, and vocal chords would recover in full
– That Kelli and I would make shrewd choices regarding our life logistics in the next six months or so

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (Jn. 14:27)

In Christ,

Will, Kelli, Amos and Luke

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July 21

7/21 Amos Update #25
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Hi Friends,

For the next few days we will be sending out email and Facebook updates as usual, but starting on Saturday we will be using our new website for Amos updates, www.amosrossupdates.com. You can put your email address in the bar on the right and sign up to receive automatic updates whenever we post them. Sorry if you have already done so and are receiving doubles for a few days! Feel free to pass it along to others as well.

Today Amos had his second simulation to map radiation for the course of his treatment. He did so great! I was with him when we had the early morning ambulance ride across the street. I think Amos enjoyed the change of scenery because he was giving the ambulance man some serious smiles almost the whole way. His bravery continues to amaze me!!

The rest of our day was filled with PT, a bath, stories, music, and lots of care for Amos. It is so nice to be out of PICU and into the more calm setting of oncology. His nurses are just as great as PICU (although there will forever be a special place in my heart for all the nurses who got us through those first three weeks!) – and my bed is much more comfy.

As we mentioned a few updates back, Amos is likely suffering from posterior fossa syndrome. To clarify, this is one of those mysteries of the brain that happens in children with brain surgery. Often they come out of surgery with this syndrome- resulting in any combination of severe lethargy, lost ability to speak, and general agitation, frustration, and confusion. One of the neurosurgeons said it’s kind of like the brain being stuck on overdrive. Amos can hear us and we think he’s understanding a lot of what is said to him and around him! He just can’t communicate, which is hard for all of us. However, the posterior fossa syndrome is extra mysterious in that it comes and goes in virtually every case. So anywhere between 3 weeks to a few months after surgery, it should disappear. We are thankful for this and asking the Lord for Amos to see the end of this syndrome very, very soon. It would be such a gift to hear his voice again and see him not have to struggle with this additional battle which must seem so huge and frightening to him.

Speaking of gifts, I thought I would echo another thing that we said a few days back. Parents, there is nothing sweeter than remembering together the truths we’ve taught Amos about Jesus. We are painfully aware of the fragility of this life, but thankful for the sure and certain inheritance we have in the Lord. Amos’ catechism questions speak to the simple but profound truths of our great God and His incomprehensible love and care for our Amos and for us. So I’ll leave you with a few more that have encouraged me.

Q: How can you glorify God?
A: By loving him and doing what he commands.
Q: Why are you to glorify God?
A: Because he made me and takes care of me.

Amen. May we all know these truths today and always.

Prayer requests for today:

-For Amos to continue to grow stronger and to rest well.
-For Amos to be patient and brave; that we would know how to comfort him and explain things well when appropriate.
-For endurance as Will and I settle in for long days of patient care for Amos. For continued health for both of us.
-For Amos to quickly move through posterior fossa syndrome and make great strides in recovery this week. For his vocal chords, cough and gag reflex, and other motor skills to return.
-For Will and I to have wisdom as we try to explain to Amos what is happening to him.

Love to you all,

Kelli, Will, Amos and Luke

__________________________________________________________________

 

The rest of the Amos Updates are posted on this blog, which you can view by scrolling through the older posts on the main page.

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