Operation Saving Aiden
Chris,
As you probably know, Aiden has passed on early Wednesday morning. Monday evening at 9:45 without warning he had a massive Grand Mal seizure that lasted over 5 hours. Aiden was unconscious after the seizure, likely from the natural sleep that comes after hours of seizing, but also from being on so much medication to control not only the seizure but the very high fever that came hours later. He was in our bed the whole time, surrounded by us. As his lungs began filling with secretions- making a dreadful sound with every breath- and his fever uncontrollable (it peaked at 106.8 f) he was comfortable and unaware of the terrible things going on in his body. When the awful rattling in his lungs lessened and he began deep sighing we knew his body was about done. Until the end, we never accepted the cancer or gave into the idea of death. People who have lived long, full lives can go quietly surrounded by family- 8 year old boys should go the way Aiden did: with all the family continuing to pray aloud and contend with authority for his healing. We didn't stop until he'd taken his last breath and let it out with a sound that surely must be the spirit leaving the body. I've never heard anything like it. I tried delivering CPR for several minutes to no avail, until Reese finally told me to stop. I never wanted to give up on him; we had tried everything possible to help clear his airways and reduce his fever, but in the end the fever and build up of fluid in his lungs proved to be uncontrollable. He died at 3:45 am on Wednesday July 27th, 2012 peacefully in our bed, surrounded by his family as we prayed for and loved on him. We prayed, cried, said goodbye, held and kissed him, loved on each other, and even laughed and shared stories about our precious boy's antics as we sat with his body.
There are no words for the pain, but a real joy inside that he's with Jesus. It's about time he had use of his legs and arms again, and I'm sure God delights in his sleepy, sweet little voice as much as we did.
Today, I have just been thinking about all the many people around the world who have poured their strength, tears, prayers, finances and loving support into our family during this time, and I will always be grateful for that. Would you please pass on this final message to the Saving Aiden website expressing our gratitude and love to all who have been so helpful to us during Aiden's battle? I would also like to include my FaceBook post from this morning which I sat down to write shortly after I carried him downstairs and laid him into his cot as we said goodbye to his body while the people from the funeral home took him away.
June 27th, 2012, 3:45 am.
Aiden... walking with new legs now on streets of gold... running into the loving arms of his Savior, Jesus. Leaping, dancing and learning how to fly with the angels. Healed and made complete in his new perfect, flawless heavenly body. A brave and courageous little warrior, who fought with such fearless & patient determination. His long battle is finally over, and he is the victor! LET IT BE KNOWN, HE DID NOT LOSE HIS BATTLE WITH CANCER! He is now experiencing the ULTIMATE TRIUMPH. An unfathomably huge host of angels has welcomed him home forever, a magnificent celebration is taking place in the heavenlies; a party just for him!
Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled:
"Death is swallowed up in victory.
O death, where is your victory?
O death, where is your sting?"
-1 Cor. 15:54-55
Aiden, we have so much love, pride and joy for you, knowing you came to this earth to live with our family these 8 wonderful years. As your big brother Christian said when you were born, "I think Aiden came to make us happy." You have succeeded my son. We are so happy for who you have been to us, and who you are now. We will miss you here, but we cannot wait to see you again.
We love you precious boy.
Update (26 Feb)
Here's a message from Aiden's family:
"We want to say a big thanks to our friends in Germany for their extremely generous gifts to reach the 10K goal. God bless you.
We are very grateful to everyone who has so graciously given above-and-beyond what would be expected. Your selflessness and kindness have been imprinted on our hearts forever and we ask that God returns it back a hundred fold.
We will continue to update our family website on Aiden's progress: vergorifamily.blogspot.com.
~Tim and Reese Vergori and family"
Update (2 Feb) from Aiden's dad Tim:
We have been updating our Vergori Family blog with some regular posts directly from Aiden, and we also just added a post summarizing our ordeals of the past 6 months since his diagnosis. We plan to make this our primary site for updates on Aiden since it's less work for us to maintain our own site, rather than to send updates through you. If you could please post a message on the Saving Aiden website inviting people to visit our Vergori Family blog for all future updates on Aiden, we would appreciate it.
Aiden has seen some ups and downs in the past few months since the last update, and he was particularly worse during the weeks surrounding our PCS, however he is stable now and very happy, as he has just received a new dog (a pug) from the Make A Wish Foundation! He is also now on an experimental drug; an old 1st generation antidepressant called Clomipramine, which has recently shown promise in clinical trials as a treatment for brain gliomas. It has relatively few/mild side effects, yet it supposedly has a very powerful delivery method to pass through the blood-brain barrier and kill cancer cells, while not harming the good brain cells. Trials from 2005 showed that over 80% of patients had a partial response to the medication (the tumor shrank), with some patients still alive after 7 years later! These trials were conducted on adult patients, and apparently up until now, it has not been tried with children, so we are hoping & praying that this is an effective treatment for Aiden.
We will post more info on the blog as we get it.
The Vergori Family
Thanks again for everything Chris & God bless,
Tim
Update (13 Nov) from Aiden's dad Tim:
It's been over a month since our last update, and I have a lot of catching up to do. Our apologies to all for keeping you in suspense. It has been another exhausting month for our family, and there appears to be no quick end in sight. We are holding up well, but a break is long overdue. The Lord is our source of strength and He sustains us.
We received Aiden's MRI results on Oct 24th. The doctors were very happy to report "the tumor has shrunk significantly" and overall, the affected area in his brain was looking much better (the before & after pics are quite amazing!). The tumor shrunk from about the size of a golf ball to the size of half of a grape. This confirmed what we already knew; we saw signs that the tumor was shrinking because of the major improvements in his vision, hearing, communication & mobility. By the time of this appointment, he was able to walk with a cane, which was very freeing for him since he didn't need the wheel chair most of the time! Also, he was 100% back mentally, as far as his wit, humor, curiosity, normal communication (speech & writing). There have even been a few temper tantrums when he wasn't getting his way, which actually was a pleasant experience for us since it had been many months since we'd last seen him that lively! All of this was so exciting for us because we knew we had our same old Aiden back, just the way we love him!
Another big breakthrough came on Sunday, October 30th, when Aiden started walking on his own after church (without his cane!) and continued to do so the rest of the evening while we were visiting with a group of friends. They all witnessed it and everyone was so blessed! He kept this up for another week and was even trying to run at times! This has tapered off over the past week, as we have seen him getting pretty tired. He may just be overdoing it a bit and wearing himself out.
He has also been lifting weights quite a lot to build back his muscle strength. It's one of his favorite things to do! He can lift a 5 lbs dumbbell with his right arm and a 1 lbs with his left arm (yes, he can now grip things with his left fingers!). We make sure he only does a few reps at a time so he doesn't overdo it.
His appetite has extremely decreased since he came off the steroids. The doctors say this should level out, but we've always known Aiden to be a picky eater. While he was on the steroids, it was crazy to see him eating so much and such a wide range of foods that he would normally turn his nose up at. His pudgy cheeks are now thinning out, and he's lost a lot of weight but he still has a ways to go to get back to his normal skinny self.
Things have mostly been better for Aiden, but we have had a few negative symptoms in the past month. For one, we learned that he has a 7.4mm kidney stone in his left kidney; another very rare & strange thing for a child to have! We started noticing bright red blood in his urine, and the doctors confirmed it with an ultrasound. The doctors recommended we leave it alone for now and he hasn't had any more blood for the past 3 weeks.
Other than that, in the past week we have noticed several minor symptoms. He was nauseated and vomited last Wednesday, but that hasn't happened since. Also he has had some occasional minor headaches lately. He has told us his vision was a little blurry here and there, but not often. Also, we sometimes need to repeat ourselves to him, so we wonder if his hearing may be affected again, but he tells us he can hear us just fine. lastly, we have noticed his left arm & fingers are a bit more stiff lately. We wouldn't be so concerned about these symptoms individually, but as they are appearing all at once in the past week it is somewhat alarming. We plan to bring him in to Addenbrookes for one last checkup to be certain that he is still cleared to fly.
Through this whole ordeal, we have trusted in God, and we will continue to do so. Please pray that these symptoms dissipate, and that Aiden continues his uphill recovery and is able to fly with no problem.
The Air Force has issued my orders, so we will be moving to the Seattle area in just over a week. It will be so hard to say goodbye to everyone here in the UK whom we have grown to love so dearly. We will always remember their kindness and friendship, as they have truly been our family here in the England. We will be returning to an area much closer to our hometown, where we can be near our family & friends.
Sifting through the myriad of paperwork & online resources and finding the right places to go not only for our family & Aiden, but also in the best interest of the Air Force, was no easy task. I had to research the best hospitals equipped to deal with Aiden's condition and line them up with an Air Force base within a 50 mile distance that can support an assignment for my particular Air Force specialty. After this came the job of convincing the right people at the AF Personnel Center that the best location for Aiden, my family and the AF, was Seattle. It also took some time for AFPC to realize that my relocation request was worthy of being "hot-rushed" (processed in a few days, as opposed to 6-8 weeks). Long story short, we were initially told that Aiden would be stateside within a few days after his MRI results on Oct 24, but in reality by the time we get there it will have taken nearly a month. We are now heavily involved in out-processing the base and getting our house & car cleaned up and ready to be packed & shipped so we can move out next Thursday. We're also busy selling, donating or throwing away all the excess junk we've collected in the 9 years we've been overseas. I have been told our car & household goods won't arrive for up to 2 months after we get to Seattle. Looks like we will be roughing it for a while in a Temporary Lodging Facility (TLF). One great blessing is that my parents have been saving my old Chevy Suburban for us and they will bring it to us when we arrive so at least we will have transportation, thank God!
Our plan is to get Aiden to Seattle Children's Hospital immediately, where he will have another MRI checkup. From there we hope to start some other form of treatment right away. We will most likely enroll him in an experimental clinical trial, as there is no other standard mode of treatment available. SCH is conducting several trials that may be helpful to Aiden. We are also seriously looking into a special "cancer vaccine" trial, specifically for children diagnosed with brain stem glioma, which is being conducted at the University of Pittsburgh Medical Center. Additionally, we are considering a gene therapy treatment in Houston, which is a more controversial, albeit clinically successful trial that is FDA approved for Phase III specifically for children with DIPG.
Please be praying for smooth, safe travel, Aiden's continued improvement, and some sort of period of rest for us as a family because we will certainly need it after we jump through all the various hoops necessary to get settled on the other side. Also, please pray for wisdom & guidance so we can select the absolute best follow-up treatment for Aiden.
God is good, all the time. I know we will get through this because He has always provided for ALL our needs. I think it will be no coincidence that we are arriving in the states right at Thanksgiving time. We have so much to be thankful for, especially this year. Aiden was our Thanksgiving baby, born on November 26th, 2003. This year, for the first time Aiden will be able to celebrate his 8th birthday, together with our family in Oregon, and with his Great Grandfather, also born on Nov 26th and celebrating his 92nd birthday! What a joyous time that will be!
Many thanks & blessings to all who are still praying, standing in faith & supporting us.
Tim & Reese
UPDATE (7 Oct) from Aiden's dad Tim:
It's been a little over 3 weeks since Aiden's final radiotherapy session, and I' happy to report that he is still slowly improving! Overall he's doing much better, but there are three main areas where we are seeing the most change.
The first area is his eyes; they have completely straightened out! They are now tracking together as normal and he has full range of motion in both eyes and, more importantly, his vision is completely clear! No more eye patch!!! Praise God, this is proof that the tumor has definitely shrunk in size because it is no longer affecting his optic nerves!
Secondly, just a week ago we noticed some slight movement from the fingers on his left hand. This is really important because he has been unable to move these fingers for close to 2 months! It has been quite challenging for him, but he has been exercising them and can now close his fingers part way and reopen them! There is now slight movement in his left thumb as well! We are continuing to pray that God brings back the full use of his arm and hand.
Finally, his balance is improving. Though he still needs help standing up from a sitting position, he can now stand on his own without holding on to something for balance. Also, just yesterday he took his first few steps in nearly 2 months all by himself, completely unassisted! He walked a short distance from the middle of our living room to the couch, taking small, careful steps all the way. Up until now he has only been able to take steps assisted by us, or while holding someone's hand for balance. Again, we are praying that Aiden will soon regain his strength and be back to walking & running around.
Aiden's MRI is scheduled for Monday, October 17th. We won't have the results until the following week on Monday the 24th when all of his Neurologists, Oncologists & Radiologists meet to analyze the findings.
Please be praying with us that when the doctors see the MRI results they will just be shocked & blown away! We are praying for the tumor to disappear COMPLETELY. Again, we believe as Jesus said, "With men this is impossible, but with God all things are possible." (Matthew 19:26 NKJV)
One more thing to add, Aiden is now down to only 4 steroid pills per day (down from 24 per day), and on Monday he will stop taking them. He is still very swollen from the medication and weight gain; you can mostly see it in his cheeks. Please also be praying that the swelling goes down and that he will return to his normal weight, as this is probably adding to the difficulties in his mobility.
Thanks again to everyone for your donations and especially for being faithful to keep Aiden and our family lifted in prayer. We will keep updating this website with new information as we get it, and reports of Aiden's progress.
Bless you all,
Tim & Reese
UPDATE (14 Sept) from Aiden's dad Tim:
Today was Aiden's 30th and final day of radiotherapy. He was so happy to be done with the treatment, we decided to have a small celebration in our home tonight with Aiden's best friend to commemorate the occasion. The doctors say the radiation will continue to do it's job for several more weeks, so we should look for symptoms to dissipate throughout the next month or two. He is scheduled for weekly checkups and a CAT or MRI scan in about a month.
Aiden continues to improve slowly day by day. For the past four weekly evaluations, the doctors have consistently found and tracked new areas where he is improving. We have witnessed marked improvements in his leg and arm strength, his eye movements and tracking, and his speech has become clearer and much smoother and flowing. For a time he had to spell out words by pointing to an alphabet chart because he couldn't verbally form words- now even the doctor understands him! He can't balance to walk on his own but has begun to walk again with our help. We are using the wheelchair less and less in the past week.
His left arm, which didn't respond at all when he tried to move it voluntarily and often contracted on its own, has relaxed and he can now move it some. It is a slow recovery, but we are always encouraged to see the daily improvement.
Throughout this time Aiden has kept his sense of humor and wit. He recites songs and jokes often, he has asked to conduct some fun science experiments which we've helped him with, and he is voluntarily practicing his maths (his two favorite subjects are Math & Science). He has us laughing often, something we are so grateful for. The Bible says a merry heart does good like a medicine, which we are witnessing. He is smiling a lot more these days, and so are we.
Once again, we would like to thank each and every soul who has reached out to us during this time. From the fund raising, gifts, thoughtful cards and emails, to the meals, house cleaning, laundry, caring times of fellowship and all the many, many heartfelt prayers. Please know that we have been so very humbled, blessed and comforted we have no choice but to REJOICE! God has been, is, and always will be a GOOD GOD, and He has shown us His mercy and grace again and again through the works of His people, worldwide.
We know Aiden will continue to improve in the next month and we can't wait to report back with even more awesome news!
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UPDATE (27 Aug) from Aiden's dad, Tim:
We just wanted to thank everyone once again for the overwhelming support we have received, both financial and spiritual. God bless you all, you are a tremendous help!
We have another update for you, and it's very good news!
We just completed week four of Aiden's radiotherapy and we have 11 days of treatment to go. Overall, this week has been much better. Aiden is way more alert (awake throughout the day, sleeping well at night), physically improved (sitting upright, using his right arm better, standing on his own, taking better steps when assisted), communicative (saying more words, sentences), chewing & eating like a champ and is generally in good spirits! One Doctor wasn't convinced Aiden was doing better when she heard our reports (she continued to brief us on "end of life" care like it was inevitable), however, after thoroughly examining him, her whole demeanor changed and she had to agree with us! She said, "It is just as you say, indeed he IS improving!" She noticed improvements in all areas, and even more strength in his left side (shoulder, arm thigh and knee). Also, his wide-eyed smile is back!
The best news came on Thursday afternoon when Aiden's Doctors showed us the results of his latest MRI scan: they see a major change in the tumor which suggests the cancer cells are DYING in response to the treatment and tumor core is actually LIQUEFYING!
Now it seems things are changing for the better day by day right before our eyes! This morning my wife Reese and I witnessed a marked improvement in Aiden's speech!!! He has clearer pronunciation and quicker sentence building which makes it a lot easier for us to understand what he's trying to say!
Praise be to God! I hope this strongly encourages everyone, it certainly has encouraged us! We are excited and can't wait to see more improvements.
Thanks again for the huge outpouring of prayer over Aiden! We are so thankful for your faithfulness to pray, and it's amazing to see the results! Please continue praying and believing for complete healing & restoration in Aiden's body. There's no doubt, we are seeing God's miracle unfold before our very eyes! It is very exciting, especially to see my boy smiling and proclaiming himself, "The.. tumor.. is.. dying!"
But Jesus looked at them and said to them, "With men this is impossible, but with God all things are possible." (Matthew 19:26 NKJV)
God bless,
Tim
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UPDATE (22 Aug) from Aiden's dad, Tim:
This has really blessed us. We would like to ask you to please relay our deep gratitude to everyone who is praying for us, and to all who have been so generous.
Also, here is a beautiful scripture I would like to share that has been a great encouragement to us:
Strengthen the weak hands,
And make firm the feeble knees. Say to those who are fearful-hearted,
"Be strong, do not fear!
Behold, your God will come with vengeance,
With the recompense of God;
He will come and save you." Then the eyes of the blind shall be opened,
And the ears of the deaf shall be unstopped. Then the lame shall leap like a deer,
And the tongue of the dumb sing.
For waters shall burst forth in the wilderness,
And streams in the desert. (Isaiah 35:3-6 NKJV)
Lastly, here's an update on Aiden's status:
Aiden's condition was steadily declining, until today (21 Aug). Just last Thursday we were told by the doctors that basically hope was diminishing and if the symptoms do not improve, they will need to stop the radiotherapy treatment early.
However, today Aiden showed more strength, alertness, verbal communication, and eating ability (better chewing/swallowing & eating more) than he ever did in the past week! More unusual is that he stayed awake most of the day hanging with the family and even joining in on a few games and times of laughter. This afternoon we were all astounded and blessed to hear him exclaim "I... have... much... more... power!"
Since the diagnosis, Aiden has been showered with thousands of prayers and we make sure he is hearing God's Word all throughout the day. We believe we are just starting to see this miracle unfold! Please increase the prayers! We will not back down; we will keep on praying until his healing is complete!
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Original post, 17 Aug 2011
I work for the DoD's AFN radio and television network. One of my coworkers, stationed in the UK, has a 7 year-old son named Aiden who is very ill. My coworker wrote the following.
I want to give you an update on our family's situation. As you may have heard, my 7 year old son Aiden has been diagnosed with a rare, inoperable tumor located in his brain stem. It's called a Diffuse Intrinsic Pontine Glioma (Google DIPG for more info). The prognosis is so unthinkable I don't even want to mention it, so just look it up if you would like to know more details. The only recommended treatment is 6 weeks of radiotherapy (30 sessions, 5 days a week), though we are hoping to try experimental therapies (only available in the states) at some point if we can get him accepted into an appropriate clinical trial.
As this type of tumor grows, it interferes with nerves in the brain stem that control motor function, and can even eventually affect other vital involuntary muscular functions such as breathing.
In Aiden, the progression has been very fast. Just one month ago Aiden appeared to be a perfectly normal, healthy 7 year old boy full of energy. Over the past 3 weeks he has gradually lost most of his strength, beginning on his left side and now affecting most of his body. He can still stand and walk assisted by us, but only for a short time. We received a wheel chair for him last Friday, which has helped a lot. He started seeing double 2 weeks ago and shortly after we started to notice his eyes turning inward, so he now wears a patch. He is now having other difficulties such as hearing, seeing, speaking, chewing food & swallowing. It's become increasingly hard to communicate with him, so we have incorporated some basic sign language and the use of an iPad for him to type words.
Last week we were having trouble understanding him when he talked. Now he rarely speaks and mostly uses one word statements such as "yeah", "no", "food", "drink", etc.
Aiden is now starting his third week of Radio Therapy at Addenbrookes Hospital in Cambridge. The radiotherapy causes him to be very tired so he sleeps most of the day. He is also taking 22 pills every day; mostly steroids that help control swelling. The steroids also have a few terrible side effects; mainly increased appetite, nausea/vomiting and nightly insomnia. The staff at Addenbrookes has been very helpful in showing us how to care for him and how to identify new symptoms. We are hoping the radiotherapy will help eventually help improve the symptoms, but they tell us symptoms typically peak several weeks after the therapy has completed so it may be a while before we see any positive changes.
PRAYER
We intended the "Operation Saving Aiden" idea as mainly a request/petition for prayer for Aiden; we see it as a mission of spiritual warfare against this tumor and attack on our family, as in Ephesians 6:10-20, and we're trying to rally as many believers as possible to stand in faith and in intercession for Aiden's complete healing. It may sound pretty far-fetched to some, but the real prayer warriors out there will know what to do, and that's mainly whom we're hoping to call out with this request. So far we have reports from people & churches around the globe who are praying for him; from all over the US to many European, African and Asian countries. Regardless of the medical treatments out there, I believe God is Aiden's only REAL hope for healing.
"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God, so that you can take your stand against the devil's schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God.
And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord's people. Pray also for me, that whenever I speak, words may be given me so that I will fearlessly make known the mystery of the gospel, for which I am an ambassador in chains. Pray that I may declare it fearlessly, as I should."
Ephesians 6:10
I cannot even begin to think how it must feel to experience this. I want to do what I can to make the situation a bit more manageable for Aiden and his parents. Please help me by keeping Aiden and his family in your prayers, donating whatever you can (it all adds up), and passing this link along to others.
Thanks.
