Aaron's Leukemia Fight
Our need right now is for basic living expenses. As I type this I don't know if my job is going to grant me a leave of absence. All I know for sure is that if my baby needs to go to North Carolina I need to be with him. We will be headed to Duke University for a bone marrow transplant within the next four to six weeks and our stay in North Carolina will more than likely last for three to four months. During this time my family of three will have no income. I will still be expected to pay rent, car payment, car insurance, health insurance, utilities and have monies to survive daily in North Carolina.
I'm mostly asking for your thoughts and prayers to see us through this next six months. If you can contribute to Aaron's fight please do so with the knowledge that I will be forever grateful for your gift and support.
We are wishing each of you a very joyous Christmas celebration. Your support over the past two years has just been an awesome display of God's promises being fulfilled abundantly. If I could send each of you a packaged hug I would....thank you again from Mom, Aaron and I. We love each of you dearly!
Aaron is doing really great. As of today, he is almost 21 months in remission and at his latest Duke Pediatric Bone Marrow Transplant Clinic checkup we were told that his new immune system is functioning at a very "robust" level. Woohoo! God is so GOOD! We are beyond thankful that God has brought him through this and forever grateful that each of you have been beside us throughout this journey. Aaron hit a new milestone in October as he was cleared to return to school after being on homebound for over 26 months. It was certainly a very happy time for all of us to see him return to doing what every 7 year old is supposed to be doing - going to school. In November, Aaron was granted his Make-A-Wish trip and was allowed to go to Florida for a very exciting Disney vacation. It was overwhelming to all of us how amazing Make-A-Wish and Give Kids the World Village made Aaron’s trip. In the midst of all that good news and excitement there are still struggles. It’s almost hard to add the BUT into any update, but it is still necessary because Aaron still needs your prayers and support.
Aaron still has struggles related to his cancer diagnosis and the treatment there of – suppressed immune system, Frequent headaches, frequent tummy aches, irritable bowel syndrome like symptoms, stiff joints, fatigue, reduced stamina, educational delays, behavior and social issues related to his journey and isolation, dental issues related to chemotherapy and radiation – while all of these issues alone seem minor and trivial – together they still keep life busy and challenging.
A “robust” immune system is great to hear but the reality is that as robust as the new one may be – they are still medically suppressing that robust immune system which still makes the common cold and viral infections life threatening for Aaron. We are still taking the same amount of immune suppression medications as we were immediately post-transplant (most bone marrow transplant recipients are weaned off suppression meds by 12 months post BMT). Add that medication with all his other medications and he is still having to take over 20 pills a day. They haven’t started his suppression wean due to the graph vs. host disease (GVhD). GVhD is diagnosed when the donor cells start attaching the host. Aaron’s GVhD started just a month after transplant in his digestive system and has continued to affect his skin, hair, scalp, eyes and mouth. Until they are sure they have controlled the GVhD – they cannot take him off the suppression meds. As bad as his GVhD has been – it is his suppression meds that are holding it at bay. Getting GVhD in one of his major organs would not be good at all.
A suppressed immune system also means that the smallest of infections – like athlete’s foot or yeast – can take months and months and months to fight. He’s had several fungal infections that have required unplanned trips to Duke. He’s been battling Moleskum for 8 months. We’ve been on so many antibiotics and creams and bleach baths it’s just crazy. So, while returning to school is a very happy thing, it’s also a very scary thing. Because of the GVhD and suppressed immune system we still have to be careful. It’s not Aaron that can hurt the environment around him. It’s the environment of kids/germs around Aaron that could be bad news for Aaron. Since his return to school (in early November) we have had to make two trips to the ER and several more to clinic. We’ve had to get IV antibiotics and deal with unexplainable fevers, viral rashes and intestinal issues.
And the subject that I least like to talk about – finances. I am thankful to report that I was able to get a full time job since my last update. It’s not making quite what I was making prior to Aaron’s diagnosis but it’s a job that affords me the flexibility and understanding to be with Aaron through all of his ups and downs. We have to return to Duke every three months (and sometimes more frequently than that) and Titan America has been very accommodating with time off. Unfortunately, due to my new hire status, it is not paid time off. So scheduled appointments and unexpected time off does impact me negatively when trying to budget out payments for expenses. I was able to minimize time away from the office by upgrading mom to an iPhone so she could Facetime me into Aaron’s doctor’s appointments. It affords me the option of being there to have conversations with the doctors while still sitting at my desk. Cell phone bill went up but in the long run that expense saves me a lot of lost wages and Titan America has been very accommodating in letting me have those conversations here at my desk.
Our current monthly expenses (approx.):
$120 (electric) – Currently being paid by family member
$333 (Car Payment)
$250 (Health Insurance)
$25 (Life Insurance)
$75 (Car Insurance)
$60 (School Meals)
$250 (Fuel) - More depending on Duke Trips and medical appointments
$100 (Tithe) – Goal that I have not been able to realize yet – but working toward it.
$412 (Misc Payments on Aaron’s Medical Bills. Too many to list!)
There are other expenses – ones that are not monthly. Various over the counter medications that insurance will not cover because they are available over the counter. Travel food/expenses while going to Duke – there are not always rooms available at The Ronald McDonald House. Christmas is upcoming. You can add all of the above and know that my net pay would not cover all of these items and therefore it becomes a juggling act of what gets paid and when it gets paid. But thanks to God there is always enough. When I find myself in a pinch He provides and for that I’m very thankful. For each of you we are very thankful.
I hope this updates comes across in the spirit in which it was written. Aaron is doing very well all things considered. These medical things we still deal with are blessings to me. They are blessings because Aaron is still here with us to experience the good and the bad. Too many lives have been lost in our immediate circle over the past two years.
He's been given several types of antibiotics, morphine, Benadryl and fluids. He often wakes up scared because he doesn't understand the face mask. Please say an extra prayer for him today!
The truth of the matter is that I haven't been waiting around to see what God is doing. I haven't been trusting God and his plan for our lives. I've been trying to do it my own way. Trying to control things. Believing that I can work it out as long as I want to. You see my days are not just spent managing Aaron's medical schedule. They are also spent juggling limited finances and scores of resumes/applications. Resources have dwindled and I really believed that I would have had a job by this point. Finding a job seemed like an easy thing to check off the to do list. None the less, the very last thing I wanted to do was put our situation out there like this again and ask for help. Asking for help is not really something I'm that good at.
Healthwise Aaron is doing well. Transplant is still very successful. But there are still over 25 pills a day to take, still doctors appointments and post transplant sideaffects that are chronic and hard to manage. Still concerns that need to be dealt with. And along with juggling those medical things, there are still financial pieces that need a fair amount of my time. I have been searching for a job. I have a file folder full of emailed resumes. I've had HR professionals look over my resume and on top of searching myself, I'm registered with five different staffing agencies. I sometimes wonder if it's because Aaron's medical/school schedule. God knows better than I that I just don't have the capacity to juggle more. Monday - Clinic & Homebound Schooling. Tuesday - physical therapy and Homebound
Wednesday - Occupational Therapy
Thursday - counseling, tutoring and Homebound schooling. Perhaps it's the 30 extra pounds I gained sitting at Aaron's bedside or the dental issues I can't afford to fix until I get back to work.
Regardless of what the reason; without a job I am forced to juggle bills every week. Each month since January we are slipping just a little bit further behind. I worry about what we will do when that gap in making ends meet gets so big that it's impossible to recover. I worry about having to decide which necessity is more important. The roof, the car to get to doctors appointments or the phone that communicates with doctors and perspective jobs. Im avoiding phone calls and emails so that I don't have to face those bill collectors that I've deemed non necessities
I am so appreciative of all the help we've received thus far. Please continue to pray that a job opens up, pray that we will have no more than what we need but enough to make ends meet. If you are able to help then I thank you in advance for your generosity!
Bring it on 2017~~~All things bigger and better for our Super Hero Aaron & his Mom & Grandmother. Take away all the negative things they have been thru the last 17 months. Replace them with positives and let this youngster get back to a normal active 6 yr old's life. Prayers said~~Amen