Friday, November 16, 2012

Christmas Jars Story: 'I was overcome by the spirit of the Lord'

(Note from Jason: This is not a traditional Christmas Jars story, but it's well worth reading. You'll appreciate this sweet families connection to the Christmas Jars movement.)

Layton, Utah:

Sometime in late April of 2009 our daughter Aumberlee became very ill. We assumed it was the flu or strep throat. She had a cough that lingered for a few weeks and a very sore throat she was also tired and often her legs ached. It took longer than normal to get over the flu, but she eventually did, after about 3 weeks. We did not think much of it after that. About 3 weeks later she woke up in the middle of the night complaining about her legs aching. Soon this became a pattern and was happening every couple of weeks. The first week in June of 2009 we went on a planned family trip to southern California. Everything was great except one day when we went to the beach Aumberlee was so tired all she wanted to do was lay down and sleep while the other kids played in the ocean and again her legs were aching. When we came home from that trip we scheduled a doctor's appointment to have her examined. We were not sure if maybe she had injured herself somehow or she had some illness that was lingering? She saw our family doctor and he said, as far as he could tell she was in good health and that the frequent leg pain might just be growing pains. We had read a little about growing pains and how they occur at night. The explanation seemed plausible for Aumberlee so we felt comfortable leaving it at that for the time being.

Through the summer she had more bouts of leg pain but we just attributed it to growing pains. By the end of the summer the bouts were getting more frequent. Sometimes every week. We would rub and massage to make her feel better. She decided to play soccer that fall and occasionally during practice and games she would have a spell. It was new that this would occur during the day, but we did not think much about it. We thought the soccer experience was so new that she might have been using the leg pain as an excuse to not play, thinking she was a little nervous about playing because all the other girls were so much taller than her. Eventually the pain got so bad and frequent we scheduled another doctorâ•˙s visit. Sometime in October she saw the doctor again (same clinic as our family doctor but different doctor). Having not much physical evidence and otherwise being in good health, this doctor concurred that the original diagnosis was probably correct and concurred about growing pains being a logical explanation of the leg pain.

The second week in November of that year Aumberlee got very ill, flu like again, but with headaches and the leg pain also. This time the symptoms were also accompanied by fevers. The weekend of November 14th she had a bout that had lasted for three days where the leg pain and fevers would come and go. My wife woke me in the middle of the night (the morning of the 15th) very concerned about Aumberlee. She was having another bout and she had been trying to console her for several hours. We prayed for Aumberlee and I took my turn consoling Aumberlee and let my wife go back to bed. Her bout finally subsided and Sunday seemed to be mostly a normal day. That night I was scheduled to go with a youth group from my church to hear Jason Wright (the Author of The Christmas Jars) speak. Aumberlee seemed to be doing OK and since I was one of the leaders of the 12 & 13 year old boys in my church I decided I would go and fulfill my obligation.

At this church fireside Jason Wright told about the origin of the Christmas Jars and shared some stories of Christmas Jar miracles. He started to share a story about a young boy from Farmington, Utah, who had cancer (I don't remember the boy's name from the story but reading Cameron's story I am sure it was his story he told), he did not just tell about the miracle but shared some back story about when the boy first started to get sick. As Jason shared the story about this boy and his symptoms that led their family to seek medical attention I was stunned (probably white as a ghost) because Jason was describing through this story almost every symptom Aumberlee was currently experiencing and had experienced in the months prior. As I recall their family had even been told by one of their doctors (at one point) that their boy was experiencing growing pains.

I was overcome by the spirit of the Lord and was being told that I was there for a reason, so that I could hear this account and know that Aumberlee's life was in peril.

As soon as I got home I shared the story with my wife. We both agreed something was seriously wrong but did not know what the next step should be. Whatever was wrong with Aumberlee was so tricky that going to the family doctor again, would not likely yield the results we needed. I told my wife how in this boy's story the Mom eventually took their son to Primary Children's Medical Center in Salt Lake City (the same Children's Hospital that serves our community) and refused to leave until the doctor's performed the tests necessary to diagnose what was wrong with their son. I should have paid more attention to the "refused to leave" part of that story. We agreed that the next day, Monday, if she was not doing better we would take her to the ER at the Children' Hospital. Well the next day came and she was not doing better. When I got home from work the three of us went to the Children's Hospital for Aumberlee to be seen by the Emergency staff. They performed a blood test (CBC) that did not show anything conclusive but her Neutrophil counts were very high. The doctor surmised that it was evidence she was getting over an illness that was viral in nature. The doctor even prescribed an anti-viral medication as a precaution, thinking it was a prudent measure not knowing the nature of the "likely" virus she had. Just before we left I challenged the doctor if Aumberlee's symptoms could be attributed to cancer. She assured me she was not concerned that cancer was the likely root of her illness (we should have stayed).

Driving home we felt comfort and uneasiness simultaneously. Comfort that the doctor felt so strongly that cancer was off the table but uneasy because we felt we did not have the right diagnosis. In the weeks to come we did more follow ups with the family doctor and started doing our own research? We checked out a book titled, "It's not just Growing Pains" by Dr. Lehman, from the library and started reading it religiously. On one of our follow up visits with the family doctor Aumberlee had what we called (after reading the book) a flash fever, because they came on so suddenly, and her temperature had gone from normal to 102 just in the time when she left the waiting room until the time the doctor saw her (about 30 minutes). As I explained the flash fevers to the doctor and we went over some more recent blood tests he became very concerned. The emergency room doctor (a few weeks before) had seen one outlying marker in Aumberlee's original blood test that was a very weak but possible marker for Rheumatism. This same marker was present in the follow up test. This good family doctor, who was by now very concerned, took it upon himself personally to see to it that he got us through the red tape and waiting period to see a specialist. Within days we had and appointment with a Pediatric Rheumatologist.

This is really just the beginning of Aumberlee's story but it is the part that is connected to the Christmas Jars! That night three years ago today (November 16th 2009), was the turning point and we knew we were running out of precious time for Aumberlee. To let you, gentle reader, know the impact I will share some excerpts from the rest of her story.

After several months of seeing specialists and many, many tests Aumberlee was finally referred (by the Rheumatologist) to a colleague of his who was a Hematologist Oncologist at the Children's Hospital. Through all the tests the one thing that was constant was Aumberlee had ╲Angry Blood╡ (as one doctor put it) and seeing a hematologist was the logical next step. After seeing the hematologist, right away just by looking at her blood the HematologistOncologist knew he needed to do a biopsy on Aumberlee' bone marrow. He saw something that made him worry Aumberlee had HLH (Hemophagocytic lymphohistiocytosis) and that the way to test for that was a bone marrow biopsy, he said this would also definitively prove if she had Leukemia or not (he had heard through the grapevine we were worried about that, a conclusion we had come to by reading the book and we had narrowed down through our own research that Aumberlee either had Juvenile Rheumatoid Arthritis or Leukemia). She was scheduled for and had a bone marrow biopsy on Thursday, February 11th, 2010.

Saturday, February 13th, 2010, while we were having a good morning as a family we received a phone call from the hospital. As soon as I saw the caller ID I felt sick, I knew they would not be calling on a Saturday to give us good news. I answered the phone, a doctor introduced herself and said "I am sorry to have to tell you this but we have a positive diagnosis. Aumberlee has Leukemia and we need you to come to the hospital right away so we can begin treatment as soon as possible." Even though we had Leukemia in the back of our minds for months we were still stunned. My wife and I discussed it privately in our bedroom, cried and then composed ourselves to go and tell the kids (Aumberlee has 4 older siblings). Within the hour we had packed our things and were at the hospital with Aumberlee.

Aumberlee was diagnosed with Acute Lymphoblastic Leukemia (ALL). We were told, ╲If you have to get cancer as a child, this is the one to get - because the cure rate for some childhood groups is as high as 90%. On February 14th, 2010 (Valentine's Day), Aumberlee had surgery to implant a Port-O-Cath that would be used over the upcoming years to infuse lifesaving medication into her little body. By the evening of February 14th, she had her first chemotherapy treatment (a drug called Vincristine).

For ALL the treatment protocol usually induces a full remission in the first 4 weeks and then the patient endures several months (up to 6) of intense chemotherapy to throw the knockout punch to the Leukemia and then 2 -3 years of maintenance chemotherapy (very low doses and less frequent). After the first 4 weeks of Aumberlee's treatment we were very eager to hear that she had reached remission but to our disappointment we were told not all the Leukemia was gone. What did this mean for Aumberlee? It meant another 2 weeks of intense induction therapy, which finally resulted in remission. It also meant Aumberlee would not have 6 months of the intense therapy to follow but instead she needed, double the intense follow up protocols. These treatments were broken down into 8 weeks cycles and each time after completing a cycle Aumberlee's immune system was so weak that the doctors had to delay beginning the next cycle until her immune system could recover. In all the intense treatment cycles, that should have taken as long as 6 months, took 18 months instead. During this time Aumberlee could not go to school, she endured many side effects of the intense drugs and illnesses due to her compromised immune system. Over that 18 month period she was hospitalized off and on and ultimately spent 50 daysnights in the hospital during that time. Many children have their hair start to grow back after the initial 6 months of intense treatment is over, Aumberlee's hair did not start to grow back in earnest until this summer (she spent over 2 years completely or nearly bald). Because of her modified treatment she had to take twice as much steroids as most kids. Side effects from the steroids severely weakened Aumberleeâ•˙s joints. She had several months towards the end of 2011 where she could not walk much farther than a couple hundred yards before she had to rest because her joint pain was too much. Eventually we found out the steroids had caused Avascular Necrosis in one ankle and just above the knee in one of her femurâ•˙s (she was then taken off the steroids).

Why tell this story that has so much pain? Because the story also has so much joy! We became stronger as a family. We shared private intimate moments not only with Aumberlee, but with our other children as well that will last into the eternities! Thanks to Make-A-Wish we had a great family vacation just before our older children started heading different directions in their own adult pursuits. We have met many other families with similar stories and have been edified by their goodness and courage. We have been uplifted and ministered to by our neighbors. Best of all, the story has a happy ending! It took us a long time to decide to tell this story (and there is much left unsaid here), because to be honest at times our faith waivered a little, and at times I donâ•˙t know if we were convinced we would have a happy uplifting story to tell? But we do!

On July 1st 2012, Aumberlee finished her last chemo treatment! She has now been in remission 2 years and 4 months. Another 2 years in remission and she will be considered cured! As a family we owe many thanks to so many people and Aumberlee's story has many twists and turns but I know the story would potentially be very different had I not gone to a fireside where the author of the Christmas Jars told a story about a boy with cancer (just two towns away from my family). How gratefull we are he shared that story, how grateful we are that family shared their story!

Over the last several years we have not been able to save enough loose change to do a Christmas Jar but this year we have managed to collect a little (not much, less than $100 I think). We plan to give that Jar, a copy of the book and this story to a family we do not know, whose child will be diagnosed with cancer this Christmas season, just a small token to pay forward some of the blessings we have received. If that family is you, gentle reader, know that we love you! Although we cannot say for certain we know exactly what you are going through, we probably know better than most. We know you have a loving Heavenly Father and that will not change no matter the outcome of your trials! We know there is the potential in the midst of your storms for great blessings to be bestowed upon your family and that by working together your family can become stronger, have more love and have more joy! Rely on your family, rely on your friends, and rely on the Lord! And someday, when you are through your trial, maybe consider sharing your story and the love of your God with someone else. Maybe share your Christmas Jars story.

With our sincerest love,

Aumberlee's Mom and Dad

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