Friday, May 22, 2015

A Great Balancing Act

I have a love/hate relationship with time. Looking back, it's amazing what time can accomplish. All the little things growing and changing that you don't notice in the moment, but when you reach the far end seems unbelievable. But the ticking of time can also be a cruel mistress. Sometimes we're kept on the precipice of disaster and while the weight of the struggle might occasionally lift, it never completely goes away, nor does it complete its deed and leave me broken. 

Through my Finnish heritage I have what us Finns call, Sisu. This is defined as having spirit, endurance, resilience, tenacity, determination, perseverance, an inner reserve of diligence, the ability to face head-on and always overcome, the recklessness that inspires a person to take on something in the face of incredible odds, bravery, empowerment AND inner strength. So there you have it, no matter the amount of defeat in this life, I will get back up, figure out a new plan and move on. 

Calvin's IgG blood count came back worse than last year which is not what we expected. Although I said we'd be happy no matter what, clearly this was an overstatement. I don't think you can prepare yourself for crappy news even when you try. I'm not saying our year of alternative treatments was a loss because it's not that at all. It's just that I had been secretly hoping the asthma meds were what caused the immunodeficiency and this was stupid wishful thinking. The two are not related. While it's great we have the asthma under control if non-existent, we still haven't figured out why his immune system won't engage. The Immunologists at Children's don't have a clear answer either. What we do know for certain is Calvin's diagnosis is Hypogammaglobulinemia, an IgG immunodeficiency, and further blood testing showed his body is NOT producing the IgG antibodies. It's a production problem. To give you some background, the normal range for a healthy persons IgG is anywhere between 673-1734, Calvin sits at 448, which is 37 points lower than last year. If the number hits lower than 400, it would be considered a dangerous level and become necessary to intervene with IgG replacement therapy. On a side note, we were informed there are rare cases where children have IgG numbers in the 200's and hardly get sick, or those with numbers in the 900's who are always sick. Clearly we don't know everything about the immune system yet. Making all this inconsequential at any time, would be one bad case of a bacterial infection or pneumonia which would warrant immediate intervention with infusions.  

However, even after the news from the blood test we still felt we had some things to try, like Chinese medicine. We decided to see an herbalist and are on our fifth month of Chinese herbs. The herbalist had originally told us he should be feeling better in one to two months, and eventually he could cure him. But Calvin has proved to be a tough case over and over again. These herbs that we've added to what we are already doing have allowed us to take him off the Flonase and Singulair. That's great and all but now it seems we cannot take him off the herbs. His mucus production is out of control. It's been causing nausea and bowel issues too which lead the doctors to order a sweat test to make sure we're not dealing with Cystic Fibrosis as well. Thankfully this test came back negative but the excessive mucus production remains a red flag. It shows his body is constantly trying to fight off invaders. Since it's incapable of producing antibodies, it compensates with trying to flush out the germs using mucus. Being on fight or flight mode and in a continual state of stress, is wearing and can be damaging to his body over time. 

While we have made great strides with managing his asthma and steered clear of pneumonia's for an entire year, when once he had an infection every 6-8 weeks, it still feels like we are only propping him up with holistic measures. We have not been able to wean the chiropractic adjustments, he has to go twice a week or the asthma symptoms come back. Holistic approaches are fine and dandy to a point. Without enough IgG antibodies, the body remains perpetually sick trying to fight off every virus and bacteria. We're coming to the conclusion that we are exhausting our options and while we hope for the best we have to prepare ourselves for the worst. 

As his parents we are stuck in a difficult spot. The two worlds of medicine take opposing views on how to manage and heal Calvin. So many people throwing their opinions around and we're left trying to weed through the mess. No one is holding our hand and guiding us through it, we're left standing on our own gathering information, evaluating and trying to do right by our child. All while juggling the finances within the confines of our budget. Unfortunately, we do not have unlimited resources. We've spent a year and a half attempting to heal him, trying to hold off on infusions. While healing takes time, things like defective genes will merely suck up time and remain broken. Allowing us to only be able to support and embrace what is. There are very few tricks left to us before it becomes clear the infusions are inevitable. It's a defeat I don't want but at the same time we have to give our child what he needs, and in the end if that IS truly what he needs, at least I know without a doubt that we gave it our best shot. We really did try to heal him. 

While some people think there's a chance he could grow out of this and his body could start producing IgG, there are other's who say "it is what it is." The specialty pharmacy that would supply us with our IVIG infusions said it's often a lifelong thing. This would be a hard road for Calvin, for all of us. A giant expensive bandaid and a burden he'd inevitably have to shoulder on his own when he's trying to make his way in the world as a young adult. He'll always have to be careful, work hard to stay healthy and deal with the risk of death that lurks in the background. An emotional stress we've already had to seek therapy for to help him deal with. It's a whole different ballgame when your child is aware of everything, the knowledge of what they're up against can be terrifying and weighs heavy on them. He's a smart kid and can't be fooled. He is so close to normal yet so far away from it too. We've tried really hard to make him better and one of these days I would love for it to be enough. Dealing with a chronic illness has undoubtably worn its holes on our family, yet through these holes we've fought to weave an unbreakable knot around ourselves. The silver lining I guess. 

We recently took our very first family vacation to Florida in March. We had to let go, escape and take a break from our problems. Feeling the warmth of the sun, playing in the waves and being together having fun as a family is absolutely priceless. I cannot even begin to describe how thankful I am for the time we had and all the memories we made. It's been something I've felt cheated of and I was at serious risk of turning into a bitter old hag resentful to anyone I deemed as having a normal life. Every now and then it's really good to pretend you don't have a care in the world. Actually it's a necessity to do this and now that I'm in the thick of the chaos again, it feels easier to take some deep breaths and recall what I am grateful for. At the bottom of it all, when the days end, when the answers aren't clear, when there is doubt, fear and sadness, I can give it to God and be carried by faith. 

Our ultimate goal is to give Calvin the best possible health, protect him and most importantly enable him to have an optimal life. It won't be just one thing that makes this happen. It will be a great balancing act, and we his parents will figure this out because that is what we do for our children. By the way, I am so thankful for my husband, we make a great team and I'm proud of our daughter too. She is cheering right along side of us. Just maybe the next blood test at the end of May will show the number hasn't changed or if we're lucky the Chinese herbs will have worked and we'll see a slight increase. If not, we'll deal and use our Sisu and faith to get us through what's ahead.