Help Gideon Fight Chronic Lung Disease

For: Gideon Perkins
Organizer: Andy Perkins
$43,043
of $100,000 goal.
Raised by 238 donors
43% Complete

The Story

- Check out Gideon's Christmas Challenge on GoLovePeople.com! Gideon's Christmas Challenge
-Please click on the UPDATES tab to learn the latest.


We are a family of 7 in Boise, ID, with 5 wonderful young boys aged 12, 11, 9, 7, & 4. Gideon is our oldest.

Many of you have heard about Gideon's health problems, supported us in so many ways, and even asked if you can help us financially. We've created this site to help keep you posted and to create a venue for those who wanted to help us face the financial aspects of treating Gideon.

For the past several months Gideon, 10 yrs old, has struggled with even just moving from room to room without getting out of breath.  He had lost a great deal of weight and though he gained some back, maintaining weight has been a struggle as he has been in pain, constantly nauseous, and nothing is appetizing. His weight got so bad having a feeding tube put directly into his abdomen has been discussed. He got progressively worse until mid-November when we took him to the ER and weren't sure he would make it.  He spent over a week in the hospital and underwent numerous tests including a bronchoscopy that revealed massive amounts of mucus in his lungs due to an infection. The infection is currently being treated with a month-long round of antibiotics.  A CT scan showed bronchioestasis which indicates permanent damage to his lungs and a chronic condition.  Cystic fibrosis and TB tests were negative so we don't know what is the underlying cause nor his long-term prognosis.

We have had several trips to Cincinnati Children's Hospital to help diagnose the underlying cause, clarify his long-term prognosis, and create a care plan.  So far, we don't not have any answers. We will going again in the next few weeks for a more extensive lung biopsy.  The suspicion is that his immune system is attacking his lungs for some reason.  They will take a about a 1x1x1/4inch section of his lung.  Depending upon what they find, we may be looking at several weeks of IV treatments to stop his immune system from attacking his lungs.  

We have also met with a lung transplant specialist to explore that possibility if IV treatments don't work.  This is a last resort as 5year survival rate is at 50% right now.  Not fun to think about, but something we must consider.   

Gideon is currently at home with oxygen and equipment to treat his lungs throughout the day. Our hopes are to have him as mobile as possible, strengthening the muscles that have become so weak over his months of illness.


This site gives you the chance to help us cover medical expenses and this trip to Cincinnati. 

Don't forget to Subscribe for Updates.  Please feel free to share this link as well.  There are widgets on this page to help you do both.   

Fine Print stuff:
-Youcaring.com does not charge a fee because it is run by donors.  However, Paypal charges 2.9% + $0.30 for each transaction, whether you pay with a Paypal account or a credit card.  So, if you give $100, we actually get $96.8 of that.  In any case, we are grateful for any amount donated.
-You do not need a Paypal account.   You should be able to pay with a credit card. If you have issues please email us at andy@andyandlynn.com
-You can always mail a check if you prefer.  Use the Contact button to send us an email and I will give you our physical address.  

Thanks,
Andy and Lynn Perkins
Gideon, Isaac, Phineas, Atticus, & Niam

Fundraiser Updates

Posted on April 25, 2016 by Andy Perkins
Gideon turned 13 last Thursday!  We have a teenager!  And a great one at that.  He's glad to be 13, but isn't sure what the big deal is about becoming a teenager.  Ha!  Somedays he has no problem being a teenager, and other days he says he doesn't want to be a teenager.  Guess that pretty much defines being a teenager.

His last x-rays showed a little bit of improvement on the shape of his diaphragm, but his PFT was a little worse.  We are waiting to hear back from Seattle before deciding whether to do the IV steroids or not.  We are nervous about making the decision.  Thee last few weeks he has been doing pretty well, but we don't want to miss something that will help him long-term.

Posted on January 29, 2016 by Andy Perkins
This is an overdue update on Gideon. On January 19th we made a trip to Seattle Children's Hospital to see an expert, Dr. Redding, in pediatric chest deformity and lung function.  Going into this specialist we had two assumptions about Gideon's condition:

  1. Gideon's sudden decline in lung function was a one time thing, and now it is just a matter of recovering. 
  2. So far we had been told Gideon's deformed chest, diagnosed as pectus carinatum (chest pointing out), was a secondary issue, if any at all.  His chest was bigger, so it should give him more room to breathe.
Dr. Redding flipped those two assumptions on us and now it looks like Gideon has probably always had a lung issue, and his lungs are actually pushing his chest out to make more total volume for him to breath.  This is very depressing for us and causes us to rethink many of our assumptions.  There is a glimmer of hope in that Dr. Redding did see evidence from x-rays that the IV steroid treatment from early 2014 might have been effective atimproving his lungs.  So we have a short window of time during adolescence to heal Gideon's lungs, keep him from deteriorating further, and get him out of the lung transplant zone. The doctor thinks his lungs will continue to be damaged if we can't find something that helps, and there's no guarantee that if we find a helpful treatment, it won't get worse again over time again.  We just don't know.  So we have to proceed with hope and faith, knowing that everyday is a gift.  A cliché, but it's true. 

Here is our plan over the next few months:
  1. Monitor Gid's lungs every 3 months with lateral chest x-rays to view his diaphragm shape and chest.
  2. Do breathing tests in a box to get his total lung volume (TLV).  This will tell us whether his lung's are actually getting better, or his chest is just enlarging.
  3. Consider doing IV steroids, cancer drugs, etc.. to see if anything can help heal his lungs while he is growing.  These are not easy decisions to make as there are long term side effects to consider.  But, if his lungs are in fact getting worse, we really don't have a choice. So if we find something that indeed helps we will continue through the years balancing the long term effects of treatment with the very real fact that he won't have much of a long term without treatment. 
It looks like we will have regular visits every 6 months or so to Seattle while figuring this out.  While not as bad as going to Cincinnati, it still is an emotional stress and financial stress on our family.  With that said, I'm going to ask for another push for funds to help us. We have some previous funds leftover to cover the immediate medical needs.  Additionally Gideon has been approved for Katie Beckett Medicaid.  This will help cover medical costs, but there is still a ton of medical and other non-medical expenses related to a chronic disease.

Ideally I'd like to turn these visits into good family bonding times for us, rather than a time when we are split apart.  It's been a rough time emotionally here as the younger boys are dealing again with fears of losing Gideon.  Gideon himself woke up with such fear and panic this morning that I haven't seen in a while.  And meanwhile, Lynn's TMJ has flared up to a point where it has incapacitated her.  She is a tough woman and takes pain well, but even prescription painkillers haven't helped her.  It's rough here folks.  We are in the thick of it again.

I'd love to use the trip in August as a time where we go as a family to Seattle and do things to build memories with Gideon, like visit the zoo.  It would be cheaper to drive the eight hours there when the weather is good enough for us to make the often snowy pass, but we don't have a vehicle reliable enough to make any trips. Roughly it costs about $1700 ($250 x 7) for a plane tickets, $150 a night for hotel, $120 a day in food, and $100 per day for extraneous things.  You all know how much Gideon has been an advocate helping kids with disabilities and chronic diseases yet he's never asked for a cent for himself.  You all have blessed us immensely with support and I'm throwing it out there that we need another push, if you can.  As usual, please do as you feel led. 

Posted on December 3, 2015 by Andy Perkins
We have a special Holiday treat for you all.  GoLovePeople.com has created a video of Gideon's Christmas Challenge.  It is a great summary of where Gideon and his Heart are right now.  Enjoy, and find someone who needs your extra help and love!

https://youtu.be/A474a85GuLw


Posted on October 20, 2015 by Andy Perkins
The past two weeks have been incredibly tough as both Gideon and Lynn have been sick.  Gideon has had a cough, a fever up to 104 degrees, and was in a lot of pain. He was back on the oxygen at night and pretty much coughing constantly.  His weight dropped 5 pounds and he is at a mere 50 pounds.   In addition, there was another fire nearby and the air quality was horrendous for about a week.  The days are long and tough for the whole family when Gideon is sick.  Isaac gets especially emotional and has a hard time leaving Gideon's side.  He is so concerned about Gideon dying.  We all are when he gets a cough and don't know how his lungs will be affected by colds and flu.

Fortunately, we were able to avoid steroids and antibiotics to treat this.  We seem to have found a combination of essential oils that boost Gideon's immune system and help fight viruses and bacteria.  We were able to manage his pain, fight off infection, thin his mucus, and diminish the cough some.  The doctor said the infection never moved into his lungs.  As of right now, Gid's fever is gone, he is coughing much less, his appetite is up, an our hope is that he is feeling better by the end of this week.

Oh, and while Gideon was sick, he managed to raise $280 for his friend Whit and the MDA.  That's not all.  He raised $520 for the Be Bold Be Bald Campaign which raises awareness for cancer.  His heart has been changed by his own illness.  He has seen how giving changes lives. 

While all this was going on with Gideon, Lynn has had migraines and incredible fatigue.  She tried as best she could to take care of Gideon and the other boys, but her body wouldn't let her.  She has had a cough that won't let her sleep well.   Please continue to pray for her.

We appreciate those who continue to fund Gideon and our expenses through this site.  While we seem to be out of the life-threatening stage where we need funds just to keep Gideon alive and pay huge hospital bills, we do continue to have about $200-$400 per month expenses for therapy, oils, and oxygen.  There are many, many people out there who are where we were a year ago.  Please support them first and then Gideon.  Always give as you are felt led to.

Posted on April 22, 2015 by Andy Perkins
Happy 12th Birthday Gideon!   We are so proud of how awesome he is doing.  He made it through a round of pneumonia with no further apparent lung damage.  It looks like this summer we will be able to get back to enjoying some outdoor activities in Idaho such as camping, hiking, and just being free this summer.  

While his lungs are doing while, Gideon is still struggling to gain weight consistently.  We are doing enzymes, probiotics, herbal supplements, essential oils, and everything we can think of.  His appetite has improves ome, but he is still not gaining weight like a soon-to-be teenager should.  Please pray that his body continues to get the nutrients it needs to heal, and that he will reach a tipping point and accelerate in growth.

And, I haven't forgotten about the T-shirts.  Hopefully I'll get some time this summer to sit down and get them out!


I'm having trouble posting images, but the link below is Gideon after donating his hair in honor of his friend Lula.  We all miss her greatly still.  

https://513ced67baaaa13df2f0-c87e80355ecc54d3dbfce9a4568d3633.ssl.cf1.rackcdn.com/6a3318b1-25ac-443d-b3e0-6aac97e7e726_profile.jpg

Posted on March 17, 2015 by Andy Perkins
Gideon has had a cough the past several weeks that would not go away.  Despite that, he had remained fairly active and his oxygen levels were good until last night.  His levels dropped down to 90% and his heart rate went up.  We couldn't get an appointment with his pediatric pulmonologist because he is booked solid, even through his lunch breaks.  Our general practicioner said it sounded like pneumonia and so Gideon is on antibiotics and stereoids. We are scared because his lungs don't have any room for further damage.  

Please pray that the pneumonia would not spread and that it would go away quickly.  And by away...I mean far far away. 

On a lighter note, we would like to start a t-shirt campaign to raise funds for Gideon's on going care.  If you have any creative ideas/slogans/drawings related to children and lungs, please let us know.  Here are some I came up with, I'm sure you can do better:

- "I Breathe For Gideon"

- "No One Breathes Alone" (front) - "Gideon's Mighty Warriors" (back)

- "Every Breath is Magic"

- "My lungs suck." (front)  "Lung disease blows." (back)

- "Would you smoke if you knew it could kill me?"

- "My Breath comes from Above" (front)  "Gideon's Mighty Warriors" (back)



Posted on February 4, 2015 by Andy Perkins
It's time for a general update on Gideon.  The bad and the good are below:

-On January 19th, Gideon had a very important PFT (pulmonary function test) that we where hoping would show significant improvement in his lungs.  While there was some improvement in lung volume, the critical FEV1 test did not show enough statistical improvement to move him out of the range where he is considered a possible lung transplant risk.  This is discouraging as it solidifies the fact that for the forseeable future Gideon may not improve much beyond where he is now.  While we are incredibly happy that his daily qaility of life is more normal, we would like him to show continuous improvement.

-The first real test of Gideon's lung through a sickness seems to be over.  He had bronchitis which required two rounds of antibiotics to tame. Our big concern was that it would spread into his lungs, turn to pneumonia, do more irrepairable damage, and ultimately drive him to a lung transplant.  Thankfully, he seems to have fully recovered and not suffered any long term damage.  This is a HUGE relief as it shows that his body can fight pulmonary illnesses.

-Gideon's weight is the other big problem we are fighting now.  Over the past year he has hung around 50-54 lbs.  At most he would gain half a pound per week, and then lose it. He has been working towards reaching 56lbs in order to get a certain prized Pokemon book. Over the past three weeks he was slowly creeping up to 56, and then on yesterday's weigh in he was at 57.3 lbs! This is the heaviest he has ever been.  Be prepared for when he hits 60lbs, we are going to throw a big party!

-We are coming up on a year when Gideon's good friend, Lula, left us because of cancer.  Pray for him, our family, and Lula's family as we all miss her.

-Be on the lookout for news of a benefit T-shirt for Gideon.  More news soon to come.

Thanks again for all the support, financial and moral.  Your financial support helps us keep up with the monthly costs of stuff our insurance won't cover;  nutritional drinks to keep his weight up, homeopathic doctors, essential oils for pain management and pulmonary improvement, medical equipment odds and ends, etc...  We continue to move in a positive direction thanks to all of you!   

Posted on December 25, 2014 by Andy Perkins
It was about a year ago that we started asking folks to support us through Youcaring.com. Last year on Christmas Eve we were flying home from Cincinnatti Children's Hospital with Gideon thanks to everyone who gave.  We are so grateful for everyone who has supported us and brought us through the year.  We have still have many challenges and unknowns, but it feels doable most of the time.  We have seen Gideon make great progress and are praying that he defies the prediction that his lungs will always be on the verge of needing a transplant.  Your support keeps us afloat!

I'll leave it to Lynn to close out the year:

It's been a tough year but one of such amazing growth. Looking at the pieces FB put together, it had me in tears. Right now, Christmas Eve, I remember a year ago today when Andy, Gid and I were released from the hospital that morning and flew home in time to see our other four boys on Christmas eve. I look at where we were then, not knowing if Gid would be with us from week to week and I'm so incredibly grateful for not just how he is doing, but where our hearts are as a family.

I remember purchasing ticket after ticket to see the specialists in Cincinnati and being humbled at the crazy way all you guys have supported us in SO many ways. We didn't need to worry about the plane tickets, hotels, and other expenses because you've lifted us financially as well as emotionally, spiritually, and physically. When I had to leave my other four boys in order to treat Gideon, I knew they were being loved, entertained, and even spoiled.  We are loved and you guys have been God's hands and feet, carrying us when we couldn't walk.

I see the pictures of us dressed up for Lula's funeral and the wind is knocked out of me. She was a priceless rarity, gave so much to us, and continues to strengthen Gideon and encourage us to live life fully, bravely, and genuinely.

I see these pictures of Gid, remembering how he was on supplemental oxygen 24/7, wheelchair bound, being carried from house to car, unable to walk even to the bathroom, and I can't give words to how grateful I am at where he is now. He's off oxygen 99% of the time, walks, plays, and sword fights. His good days outnumber his bad days and we picture our future with him in it. It has been such a year of loss, indescribable sorrow, tentative hope, and unexpected progress. We sit now, as always, in unfathomable grace, stripped of illusion, knowing the little control we have and resting in the hope of who holds us.

This year I pray we live fully. Love deeply. Love truly.  -Lynn Perkins

https://www.facebook.com/GeriLynnPerkins/posts/10204320464065571?notif_t=like_tagged




Posted on December 11, 2014 by Andy Perkins
Bad news.  Gideon has bronchitis.  He is on antibiotics as a necessity, but we fear it will set back the progress we have made on his digestive system. 
The persistant dry cough that started the lung problems over a year ago is back.  If the bronchitis turns into pneumonia then it most likely will do more damage to Gideon's lungs, and he has no margin for more damage.  Please pray that the Bronchitis passes quickly and that it does no damage to his lungs. 

Every time he coughs it's a horrible remember of how vulnerable he is.  His spirits are good, but Lynn and I are struggling to keep the dark thoughts away.  We have to take it day by day again. Actually it's more like cough by cough.  I at least get a break while I'm at work, but Lynn is with it all day. Pray for her peace to hold up.

Posted on December 8, 2014 by Andy Perkins
I know it's been a loooong time since I've posted an update.  Here are a few highlights:
  • We've had several good months with Gideon's breathing stabilizing, and some gains in his eating.  His appetite has improved, but he is still struggling to gain weight.  He is on enzymes, probiotics, and numerous supplements.
  • We are going to hold off on the feeding tube for now, but it still is a possibility for the future.  Please keep praying that his digestive system heals and that he starts gaining weight.
  • The severe, random nerve pains are less frequent, allowing him to get a full night of sleep most nights.
  • His wheelchair use is down significantly.  Many times he chooses not to use it.  I wish we could get rid of it permanently, but I don't see that happening yet.
  • He's been able to go to our homeschool co-op on Thursdays and last the whole day.  He is participating in his classes and enjoying being with friends again.
  • Your financial support continues to be a blessing.  Andy's employer is switching insurance plans for 2015 and the deductible and out-of-pocket maximum will double from this year.   We are praying Gideon won't need any major surguries/hospitilizations next year so that we don't meet that out-of-pocket maximum.  The conventional doctors have said they can't do anything more for Gideon.  So, we are doing alot of therapies, essential oils, and supplements that are not covered by insurance so our medical expenses still are significant.  We appreciate everything that has been and will be given to help us fight with Gideon.  
  • Gideon has a specific prayer request.  He would like to be able to carry his backpack again at Co-op.  Right now the weight exhausts him too quickly.  Pray that his strength continues to build, and that his lungs keep improving in functionality.
Here is a Facebook update from Lynn to close out:

"Good news and bad news. Let's start with the bad and end with the good.

Gideon's come down with a yucky cough in the last two days. It makes me want to vomit. The cough that started this all in Spring of 2013 seemed not so bad. No fever, not horrendous sounding, but extremely damaging. It was so atypical it caused the pneumonia to be missed by the doctors. So I'm trying desperately not to let my fears take over with the "what-ifs" and emotional nose-diving. That cough puts me right back in all those hospital rooms and sleepless nights holding my baby, not knowing how much longer he's going to live. *sigh*

Now, good stuff. Gid's been doing SO well the last few weeks before this cough. His oxygen saturation is almost always in the normal range, his resting heart rate is lower, and his activity levels have been AH-mazing. Even with the cough his oxygen saturation is within the normal range. 
We spent a week with family for Thanksgiving and the things he was doing Blew. My. Mind. He was going up and down stairs like a boss, tubing behind a four-wheeler, and taking very few breaks to catch his breath throughout the day. Not only so, but he's been hungry on a consistent basis, which hasn't happened since spring of 2013. We've been super excited at his functioning level.

I'm trying hard to not let fear spiral out of control. One thing I've gotten a little better at lately is releasing the illusion of control. It's one of those things I have a feeling I'll be learning over and over again for the rest of this life."
-Lynn Perkins



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