Kavanagh Strong

$9,404 of $15,000 goal

Raised by 95 people in 33 months
Michelle Geyer Jayroe
on behalf of Stephanie Kavanagh
 POULSBO, WA
In the early morning hours of October 11th, Bailey woke up gasping for air and coughing up blood. After a trip to the ER and having an abnormal chest X-ray and difficulty breathing, she was rushed to Mary Bridge Children's Hospital in Tacoma and has been there since. The fluid in her lungs ended up being blood. While her team of doctors are doing their best to diagnose her (and having a difficult time doing so), we do know that the Kavanagh Family has a long road ahead of them. One diagnosis that they are leaning toward is
Idiopathic pulmonary hemosiderosis, but that can only be made after ruling every other possibility out. Stephanie and Matt are both taking time off from work right now while they try to figure out what is happening. They will need to adjust to an entire new lifestyle. Stephanie will likely need to take a leave of absence from work, so they will have daily expenses to take care of. They will also need to make a trip to Orange County, CA to see a Rheumatologist Expert in the near future. Bailey is a very strong little girl with an amazing personality and we are all fighting for her. ❤️ #keepbaileycray
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Hello! Our little Miss Bailey and her family are still going through some really tough times. Since last Fall, Bailey has seen several specialists and has had a few bleeds. She's been at Seattle Children's Hospital since last Monday. After a lung biopsy, she now has a new diagnosis, with a more aggressive treatment plan and more severe side effects. Please see an update from Stephanie from yesterday.

Stephanie Kavanagh
3/24/2017
Still processing our update on Bailey. We have a new diagnosis from the biopsy-pulmonary capillaritis. Very similar to IPH with the difference being IPH is more of sporadic bleeds following illness where as pulmonary capillaritis is constant inflammation of the capillaries and also the space surround the lungs. We have a new treatment course to try. The hope is we knock it into remission and then can work on figuring out the maintenance dose of immunosuppressants to keep her from breaking through with a bleed. This treatment is more immunosuppressants than steroids. Goal is to get off oral daily steroids eventually but we need to supplement with them until some of the other infusions take action. It's so much I don't even know how to type this post but I know everyone is wondering how she's doing. First we're starting with a 3 day pulse of high dose steroid IV infusion similar to what she had before but double the dose (Which means much worse side effects) this first pulse is running as we speak. It causes pain in the injection site and she had a slight "rash" which we got to go away after slowing the infusion down. She was having a really hard time with this until she finally fell asleep. Next she'll have IVIG infusion (tonight after the steroid infusion) which if I'm getting things correctly means we are giving her good antibodies that are filtered from others blood. The hope is we overload her with good antibodies and she flushes some of the old antibodies (she is making antibodies that are attacking herself- autoimmune response) and the bad get flushed out. Tomorrow she will have a very long infusion of a drug called rituximab which I don't know if I can explain but will try. This is what we hope brings remission. It stops her body from making B cells (I think that's how the bad antibodies come about). This drug takes 3 months before it's in effect but lasts 6 months- which is why we have to supplement with steroids for now. There's a small risk that after the fact her body may stop making any antibodies at all - good or bad- which would mean she couldn't fight off new infections. If that were the case it would call for IVIG infusions for the rest of her life to continue to giver her antibodies. We have to weigh the risks and benefits. There is also a very small risk of some very major things that I just can't even get into because well I just can't go there. The doctors seem confident this will help. We will have multiple rounds of these infusions over the next few months which we're still putting together. But again the hope is remission. We have an awesome team between the nurses, the pulmonary doctors, the rheumatologist, and the world renown pathologist. They all got together and had a conference regarding baileys care plan. Please just say a prayer for Bailey tonight. I don't think most people can even begin grasp what this is like or what it feels like for any of us but a prayer, or a little chat to whoever it is you speak to will be much appreciated. Thank you for the love support and prayers. Tomorrow is going to be a very long, stressful and scary day. Keep Bailey in your thoughts. #rareaware #rarediseasesucks #warriorbailey #callingonBaileyswarriors


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They broke out of the hospital today!!!! Here is the latest update from Stephanie:

We get to go home today. Life will be a bit different now. But we know what to watch for and have an idea of how to keep Bailey safe. We have a plan for follow ups and a plan for when/if his happens again. This has brought a new outlook on life to all of us I believe. Cherish every moment we have, things can change in a second. You never really think something like this will happen to you, or yours, then you have to find this amazing courage and strength you didn't even know you were capable of having- because what else is there to do really....#KavanaghStrong
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Here is an update from Stephanie:

We met with the rheumatologist this morning and she was very happy with the way Bailey is responding to her treatment. We talked more about germs and keeping Bailey safe. We have our first follow up with her in silverdale on 11/3. They expect to discharge her tomorrow with a list of meds. We will be keeping her home from school for now and re-evaluate on 11/3. We will be working to taper her dose of steroids, as high doses for long time can cause growth problems. We will have follow up X-rays and scans in our future but they would like to limit the amount of radiation since we know this will be something we deal with always. We will go for other studies with the pulmonary specialist to work on keeping her lungs strong. We have to be careful about sick people being around Bailey because her immune system is suppress with the meds. So, friends will be able to come over and see her as long as they are felling ok. If we are feeling sick even with a cold or cough, we need to wear a mask around her. Her physical restrictions will be set by her and what she feels she can do. Today has been good. Still lots to figure out but all promising for a life we can manage and make wonderful! Thank God, and thank you to every single person who has kept us in your thoughts! #KavanaghStrong
❤️
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Kavanagh Strong has reached 51% of its goal. Thanks to everyone!!!
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$9,404 of $15,000 goal

Raised by 95 people in 33 months
Created October 15, 2016
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MJ
$25
Michelle Jones
27 months ago
1
1
$500
Anonymous
27 months ago
1
1
$50
Anonymous
28 months ago
1
1
$30
Jackie Briere
28 months ago
1
1
CB
$50
Chloe Blumenstein
28 months ago
1
1

Thinking of you Bailey and Kavanagh Family. Sending much love and hope your way.

$50
Consuelo Hughes
28 months ago
1
1
KT
$30
Kevin Thomas
28 months ago
1
1
RW
$64
Rachel Wheeler
29 months ago
1
1
$40
Chelsea Mathews
30 months ago
1
1

<3

$25
Carrie Atkins
30 months ago
1
1
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