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I’ve gotten so many questions about Kate lately, I figured it would be easiest to just put all of the info in a note. A lot of the questions come from just wanting to understand more of what is going on and what it’s like. I hope this helps bring anyone interested up to speed. I had a very long talk with Kate’s immunologist last week and feel we are just starting to get a grasp on what’s going on. I’ve also found some support groups online that have been a wealth of information. Hearing from an adult what it is like has been so helpful! Writing this will also help me process things more “out loud”. I can’t guarantee it will be short though and will not be offended if you don’t read it all. J Also, I don’t feel like we had much info going into this ordeal and I hope and pray that we can share with other families going into something similar. God gave us two families locally to lean on and several from afar and it’s been unbelievably helpful. I hope that we can do the same at some point.

INFUSIONS: Kate has had 4 IVIG infusions to date. These infusions are specific antibodies pulled from 10,000 to 50,000 plasma donors (per infusion) and given to her through an IV. These antibodies are to give her body something it is not creating properly on its own, specifically IGG. It is similar to being low in say vitamin D and taking a supplement to add to what your body creates. With IVIG, these antibodies are metabolized in about 3 to 4 weeks, meaning they have to be replaced that often. Her body gets a big “peak” dose at infusion with the goal being her “trough” numbers, or her counts 3 to 4 weeks post infusion, will stay within a “normal” range. Kate has doubled her IGG numbers since starting infusions, but they still aren’t high enough. We are constantly tweaking her doses to get her just the right amount. This is a lot of guess work, as every individual metabolizes the antibodies differently. Her infusions have been every 4 weeks, but the next one will be after only 3 weeks. They are trying to see if they can’t help increase her trough numbers. The doctor (and I) will be out of town at the 4 week mark, so it works out well for our schedules too. Unfortunately, the higher the amount we give her gets, the worse the side effects get.

SIDE EFFECTS: The IVIG infusions have a very high viscosity. This causes the meninges, or lining of the brain, to get irritated. Some patients have no side effects from IVIG infusions, some have mild symptoms like tiredness, and yet others have horrible ones. It’s very tricky, from what I understand, to find the right balance to controlling these side effects. The reaction is different for every single person, with some having issues during infusion and some after. For Kate, she feels fine during infusion and for at least 24 hours after. Typically between the 30 and 40 hour mark, Kate’s side effects hit. She will go from being completely fine to completely horizontal in a split second. It is very frightening how fast it comes on and how out of the blue it seems. For Kate, she gets aseptic meningitis. Her head hurts incredibly bad and feels like it’s on fire (to her and to the touch). She can’t sit up, let alone walk, even to go to the restroom or throw up. She is achy all over and feels like she’s been hit by a truck. She can’t focus her eyes on anything and talks nonsense. She cries, whimpers, and giggles in her sleep. She won’t eat for 24 hours and can’t handle light or sound. Unfortunately, there is nothing we can do when it hits other than simply treating her symptoms. It’s pretty miserable for me and I can’t even imagine what it’s like for her. We give her Benadryl and Tylenol every 4 to 6 hours around the clock and Zofran for the vomiting as needed. We learned through the support group that ice packs on the head help and she’s found some relief with those. Unfortunately, the amount of heat she’s radiating causes them to go warm within 30 minutes leaving us changing them out constantly. The first few times it happened I was sure that it was because she didn’t take it completely easy after infusion, but her doctor has assured me that this probably isn’t the case. As quick as it comes on, it goes away. Usually she has 24 hours of miserable and then headaches and a hot head off and on for a week or so. Thankfully, we haven’t had to be hospitalized for the symptoms. This mommy does NOT like hospitals and will do whatever it takes (ice packs every 30 minutes, timers all night for meds, etc) to avoid them. Sometimes you can prevent side effects by premedicating, over hydrating, and slowing down the speed at which she gets the infusion. We’ve tried most all of them. This next time, we will be adding a steroid before infusion. I really didn’t want to do this because of the side effects of steroids and because she has been on so many steroids already in her life. If this doesn’t work, we will have to switch to a different “brand” of infusion and different technique where she will get smaller doses, just under the skin on her tummy (called SCIG or subcutaneous immunoglobulin), once a week instead of the IV every 4 weeks. Basically it just breaks the dose down into four smaller doses. Some patients tolerate this better, but it’s harder to make adjustments to get a patient’s trough levels up to normal this way. This may be an option we look into after her trough levels come up because we can eventually do them at home.

C-DIFF: Kate was diagnosed with C-Diff, an intestinal infection, back in January. She was having some stomach issues at the time and I think it may have been an unrelated finding on one of her samples. It is basically an overgrowth of bad bacteria in her gut, often caused by antibiotic use. With her having been on more than a hundred rounds of antibiotics, it’s not surprising. Ironically, the treatment is a very strong antibiotic that kills off the good bacteria, like other antibiotics, but also kills off the bad bacteria, giving the gut a clean slate again. We’ve treated for this 3 times now since January with no luck in killing it, despite enormous amounts of probiotics to help populate the good guys. The nasty antibiotics did kill off all sorts of things leaving her with a bad case of thrush each time. We then had to treat that with an antifungal, all 3 times. In the end, we’ve come to the conclusion that the C Diff is colonized, or has set up residency in her gut. Kate does not currently and never has had the symptoms of C Diff. In the end, when faced with the decision of leaving it or a fecal transplant (yes, for real... no, don’t Google it), we decided to leave it. More than likely it will create an issue at some point, but for now we are leaving it be. There have also been some studies on drinking the IVIG solution to treat the gut. We may look more into that versus the number 2 option……

IS IT WORKING: This has been one of my biggest questions, too. With all of the “sick care” during these meningitis periods, it hasn’t felt like she’s been well. On top of that, the treatments and meds for C Diff, followed by treatment and meds for thrush, hasn’t felt like much of a break. We still seem to be at the doctor and pharmacy a LOT still. THAT SAID, when reviewing her history for the last 4 months, she has only been truly sick one time. That is huge! She had bronchitis, croup, and a sinus infection all at the same time, BUT it cleared up with just 1 round of antibiotics for 14 days. That is also huge! She hasn’t had any other infections, stomach bugs, or other viruses since starting infusions. So while it certainly doesn’t always feel like it, I think it truly is making a difference. The good news is it will only get better from here. This week I asked Kate if she thought it was helping. Keep in mind she has to endure the infusion and THEN meningitis and the horrible side effects, knowing that it is coming. She said she feels much better and feels happier. I don’t know that any of us, including her, know how bad she’s felt every day prior to. I do know that she has a ton more energy (not always a good thing!). She calls IVIG her “go go juice” (thank you, Karen L! -G) and some days I wish I could have just a shot of it. Glenn and I noticed that we have not ever heard her laugh as much as we have in the last few weeks. This gives us a little more patience in dealing with the ugly of it for now.

DIAGNOSIS: If you’re reading this, you have no doubt heard that our heart’s desire has been to have a diagnosis for Kate for many years. I’ve believed that it would help us in caring for her and finding a treatment that would work. While there is truth to that, I put far too much weight in the idea that “I” could do anything about any of this. With some gentle prodding, I’ve come to realize that I need to get over that. A few weeks ago I reached a point, after entering in to a place of anger, that I suddenly didn’t want a diagnosis. Honestly, the thought of one felt like it would box us in. On Wednesday I talked at length with our doctor and asked a lot of questions, as I needed to have a better picture of what things would look like past the next 4 weeks. There is benefit in just focusing on the now, but with increasing bills and decisions to make, it’s hard to plan life 4 weeks at a time. When I asked about a diagnosis, the doctor said, “Well, of course we do. We wouldn’t be doing this without one.” Ha, so typical. For us, we never really heard anything specific about a diagnosis. Sure we heard, “this number is low” and “such and such is off”, but none of that meant much to us. They continued to run test after test and were obviously searching for something. To the doctor, she had found the WHAT, but is still looking for the WHY. She has two diagnoses to date and has some pending labs from 2 months ago that we are waiting on results for which are looking further at whys. After those results are in, they really have nothing else they can test for at this time. They still take 3-15 vials of labs at every visit, though that may decrease after this. She has been diagnosed with hypogammaglobulinemia and Specific Antibody Deficiency or SAD for short. I’m not sure why they couldn’t come up with an abbreviation of the first. J Hypogammalobulinemia means her immunoglobulin levels are low, specifically IGG for Kate. Specific Antibody Deficiency means the antibodies she does create on her own, don’t function the way they are supposed to. This means her body doesn’t mount the proper response to viruses and bacteria. This became apparent by the fact that her immune system doesn’t retain knowledge of a response to vaccines. In the case of vaccines, it leaves her with major gaps in protection. Worse yet, her body can’t retain knowledge of viruses and infections she’s been exposed to. So every virus and infection she’s exposed to, her body has to learn to fight over and over again, as if it were the first time she was exposed to it. Both are genetic issues that have been there since birth. Both are treated by IVIG infusions. It blows my mind how it all works, but the 10,000-50,000 donors give Kate’s immune system the knowledge of how to fight based off of illness the donors have been exposed to and immunizations they’ve received. It is mind boggling, for sure! It’s like downloading an immune update to her system every few weeks.

WHERE DOES THAT ALL LEAVE US: Basically we are just trying to hang on for the ride. Knowing that this will be a long term thing leaves me feeling like I need to settle in to a new norm and get “used” to it. However, this has been WAY more disruptive than we expected. I can’t believe how fast 4 weeks goes by. It seems like for now our weeks roll by like this: We have infusion day which involves a minimum of 7 hours at the med center. The stress level is high that day, but Kate has handled it like a champ the last two times. We have been having Leah go to a friend’s house, which usually means a midweek sleep over to avoid more stress that morning. We all spend the next day recovering and trying to take it easy and prepping for the inevitable. I have to make sure that we have Gatorade, groceries, and medicines on hand, and any other errands done, as there is no running out to get them once things hit and there is no telling when it will hit. The day after seems too easy and it’s easy to forget she’s going through anything. Then, the meningitis hits at an unexpected time and we try to control symptoms and not freak out. With every four hour medicines, not much sleep is gotten in these days. She, then, starts feeling better and we tiptoe hesitantly back into normal life, praying she doesn’t overdue it. About a week later she’s feeling great and full of energy. We carry on with normal for 2 weeks, just long enough to forget the bump ahead. The days prior to infusion, Kate starts feeling down again. We haven’t pinpointed if it’s the levels wearing off so that she physically feels worse or if she’s just anxious and sad about the next infusion, knowing what it brings. Then it’s rinse and repeat…. We will continue homeschooling for next year. I cannot imagine what it would be like to have either one of the girls in school during all of this. Thank God for that blessing as exhausting as it is.

Kate is an absolute rock star. I don’t know that she could handle all of this better. She amazes the nurses, doctors, child life specialists, and everyone else, every time. She is tough, brave, smart, and keeps a sense of humor through it all. She always puts up a fight for her IV and I don’t mind that she does. She is never disrespectful about it and always responds obediently. I don’t ever want her to get to the point that she doesn’t want to fight it. Yes, she’s getting used to it and knows what to expect. But I want her to have that little bit of fight in her always.

Glenn and I are doing fairly well. Overall, it feels like a mechanical bull ride. Who knows what way is up and what direction we are going, just avoid hitting the mat. Our communication has much improved, Glenn has gotten much more involved in Kate’s care, and we seem to be in step with each other. I can’t speak for him, but for me it’s been an uncomfortable season. I’ve had to start learning to ask for help and even texted a friend regarding chicken nuggets the other night. If you know me well, you know that is some serious desperation. J I’ve spent a lot of time thinking out loud and have found myself in a place of beautiful, uncomfortable anger. I think my inability to do anything in this season has left me alone with my thoughts and feelings. I’ve had to follow my thoughts of “if God______, then _____” through to the end instead of finding a way to fit ME in there. It’s left me sorting through feelings, looking for the roots, and trying to learn to point those in the right direction. I’ve become angry about Kate’s health and the path that has been handed to me, but instead of shutting it up because that “feels wrong”, I’ve been able to follow that all the way through to the fact that I am mad that Satan has ruined this world and damaged my innocent daughter in that. It absolutely sucks to walk this path and that is okay to say. I just have to constantly watch that my anger and disappointment stay towards Satan and not God. Trying to find God’s truths in this broken place can be so difficult and Satan would love for me to turn that anger towards the Creator of all perfect things. I still struggle to find a place that I can honestly say “It Is Well” with me, deep down in my soul.

PRAYER REQUESTS: We absolutely covet your prayers. To know that we are being lifted up and covered by so many people’s prayers, is the coolest part of this whole journey. I don’t know how people handle life without faith and friends like you all. Thank you from the bottom of our hearts!
-         Obviously, the biggest one is for healing for Kate. We’d love for her the infusions to give her system a break and a chance to restart. We pray that God will heal her completely. While we wait for healing, we pray for protection for Kate, spiritually, physically, and emotionally. It’s no shocker that something like this comes with huge risk in all these areas. We pray that this whole ordeal will not negatively affect her relationship with God and that we will be able to nurture that. Often she hits us with loaded questions and it leaves us feeling like we are traversing a field of landmines.
-         We would love to find the perfect balance of having her numbers where they need to be without side effects. We know that He is more than able to do that and pray that He guides that process.
-         Glenn and I are faced with so many decisions every day regarding all of this. Please pray for wisdom for us, for protection for Kate in our decisions, that we will have wisdom beyond today, that we will have unity, and that we will follow His leading. Also, that we will stand firm in our decisions and not let doubt creep in. It is so easy to second guess every single decision that we make. Pray that God would use this to strengthen our identity in Him, both individually and as a couple. The logistics of everything that having a chronically sick kid involves can be crushing sometimes. We’d love prayers for wisdom in finances, time management, balance of priorities, and knowing how to take care of and serve ourselves and each other well. Pray that we would all choose joy in every step of this journey.
-         It’s been heavy on my heart that Leah doesn’t get lost in the mix of this all. We have tried to make this a priority all along, but as a mom I still worry about it. She seems to be doing great. I pray that if she is struggling or begins to, that God will show me that clearly and that he will show me how to better minister to her. I pray that as only He can, he will use this to grow her character and testimony.

Thank you friends and family for doing life with us, even when it gets messy. We are blessed by you all!