￼ 09/29/2017 Astrid's first debut!
Bill and I always wanted to be parents. We dreamed of holding our little one in our arms and nurturing them through the most precious stages of their lives. That dream came true a year and some change ago. It was the happiest and scariest adventure yet. We waited so long for this miracle so we meticulously planned for the arrival of our little baby girl. ￼
Her name is Astrid. An amazing little girl with the sweetest disposition, and a smile that will brighten anyone’s day. She’s tough as nails and is in every way the most loving little one we could ever have hoped to have in our lives. She loves her food, music, she knows how to shake it and there really isn't anything that makes her unhappy. She's always smiling. Her development was normal until about 8 months of age. She was babbling, rolling and getting into mischief as a normal little girls should. ￼
Astrid's 7 month birthday
She fell ill a little after her seven months. She had a cough so I took her to the doctor. The doctor didn’t see or hear anything to be concerned about. We treated her symptoms as an everyday cold taking every preclusion to ensure she would get better. She worsened over the course of a few days with coughing fits, she stopped eating and became extremely lethargic. I took her back to see her doctor and she still heard nothing in her lungs, but her energy level and weight loss painted a different picture. The doctor sent her for an x-ray and that showed she had pneumonia. In the ER they tested her saturation levels and she was unable to maintain normal oxygen levels on her own, so the doctors decided to send us to Mary Bridge Children’s Hospital. We stayed one night in general, but Astrid’s saturation levels were so bad they moved us to the ICU for extra support. ￼
06/02/2018 day two in Mary Bridge PICU
We spent every night with the nurses and respiratory therapist helping her through coughing fit after fit, helping her to recover from desats with blow by oxygen and suctioning flem from her airways so she could breath. Seeing our little one so sick was the hardest thing we have ever been through. The feeling of helplessness overcame us with every alarm and buzz of her machines. A week and a half later she was well enough to wean down off high flow oxygen, but it was not enough to breath room air and come off oxygen completely. They moved us off the ICU floor back to general and we had high hopes to be on our way home. ￼
06/26/2018 four days before release
Astrid took almost two weeks to wean from three liters of oxygen to room air. Doctor’s were concerned about how long it was taking for her breathing to recover. Bill and I worked hard on her eating to regain weight. We also worked on physical therapy so the doctors would see she was progressing fine outside of being stuck in a hospital bed for a month. She was put on steroid therapy to open her lungs to draw down her need for oxygen support. Sure enough the Prednisone worked and she finally transitions to room air and we were cleared to go home. Two and half months passed and she’s was doing well, progressing, crawling, walking in her walker, pulling herself up, sitting, talking, babbling and getting into everything like a little one should. We had a great summer and we had started to put those days in the ICU behind us. ￼
09/3/2018 One week before re-admission to Mary Bridge.
In early September her illness started all over again just as before. Again, her doctor thought she looked and sounded fine on her first visit and sent us home. That weekend her cough got worse and she stopped eating. Monday morning we didn’t wait to demand an x-ray and sure enough the pneumonia was back, and she tested positive again for the Rhino Virus. We were sent back to Mary Bridge with doctors puzzled why she was following the same pattern as before. The resident Pulmonologist performed a Bronc scoping of her lungs to see what her lungs looked like on the inside of her lungs. The Bronc test showed Astrid has Numismatists Pneumonia which is easily fought off by those with normal functioning immune systems. We now had answers to what is causing the pneumonia and could start treatment for that. A series of blood tests were also done to her immune system which showed Astrid is unable to create enough antibodies to fight of certain viruses such as this type of pneumonia the Rhino virus. Mary Bridge felt we were better off being moved to Seattle Children's Hospital. Their immunity and infectious diseases departments could take a better look and run more labs in house while she recovers from the pneumonia. ￼
09/17/2018 Seattle Children's Hospital
September 17th 2018 and her test results show that Astrid has an immune disorder MHC Class II Deficiency (MCH II Deficiency) or Bare Lymphocyte Syndrome. This immune deficiency is a Severe Combined Immune Deficiency (SCID), where there is a "combined absence of T-lymphocyte and B-lymphocyte function. There are at least 13 different genetic defects that can cause SCID. These defects lead to extreme susceptibility to very serious infections. This condition is generally considered to be the most serious of the primary immunodeficiency. Fortunately effective treatments, such as stem cell transplant, exist that can cure the disorder". Because Astrid B-lymphocyte or B cells in her immune system are not working she is unable to produce antibodies which help protect the body against infection such as bacteria and viruses. She is receiving an infusion therapy of antibodies called IVIG which replaces the the antibodies the body should be making, but does not help her make more. IVIG provides a temporary solution that will need to be repeated as often as a lifelong requirement. Without it the common cold could be fatal to her. An option to cure Astrid could be a Bone Marrow transplant. Although this route is likely the one we will take we are waiting for vital tests to come back to ensure she is a candidate and test that will help match her with a suitable doner.
What We are Asking and Why
Bill and I never ask for help, but this isn't something we are asking for us we are asking for Astrid. We don’t know what her illness means as of right now except if she doesn't receive treatment her next illness could be fatal. Her first hospitalization drained a large portion of our savings. Our second stay looks like it's going to be as long if not longer. Her immune deficiency will require a significant amount of testing and procedures, and the possibility of her receiving a bone marrow transplant has Bill and I terrified. She will require a significant amount of time, testing and monitoring to ensure her immune system has been replaced.
The funds we raise will cover a number of things including:
- Her first hospital bill not covered by insurance
- Out of pocket costs during her stay (e.g. Travel to and from the hospital and food)
- Anticipated costs of her current stay not covered by insurance and out of pocket expenses
- Medications, procedures for prevention once released, and the tons of anticipated co-pays anticipated for outpatient visits, specialists and follow up visits.
If we raise more than our goal and everything raised outside of the scope of Astrid’s needs has a purpose too. Our intent is to donate everything we do not use for Astrid to Mary Bridge Children’s Hospital in Tacoma Washington and Seattle Children's Hospital. The donation will go to the assistance of children that may have prolonged illnesses like hers.
Are You Interested in Being a Bone Marrow Doner? If you're interested in being a doner, learning more about bone marrow transplants or want to read success stories check out bethematch.org . This is the registry our doctors will use to find Astrid a match for her transplant. Even if becoming a doner doesn't mean you're a match for Astird you could be a match to another child and save their life.
Bill and I plan to keep an open dialog on Facebook and other social media to share Astrid’s story and her progress. We hope others find her story and share it forward as well as share their own. Any donation helps no matter how small. Prayers are invaluable from those who don’t have anything to give. Please keep Astrid in your thoughts and prayers and thank you for listening to her story! ￼