James; "Prepare to Be Amazed!"
We are creating this page as James finishes his second week of chemo treatment and starting his third. We never would have imagined a summer like this for our little James! After he was admitted to the ER at Loma Linda on Monday, July 28th, 2014, a bone marrow biopsy was done. The next day we were told of the abnormal cells they found in the bone marrow. Our hearts sank and our lives were flipped when the doctor told us of his diagnosis with 100% certainty. We have an amazing God that will get us through this and we know that we must walk with Him every step of the way. Our first plan of action was to start praying and we reached out to our friends and family for continual prayer. Our IHC church family reached out and prayed with us during that week as well as our neighbors and school community and their churches. We are amazed at how quickly they went into action; words can't convey how deeply loved we felt. That love helped keep us going as we spent day and night learning about this disease at the hospital. We had an emotional roller coaster of a week, but James' spirit and smile kept us going. He endured another surgery on Tuesday; spinal tap with chemo and the placement of his port. It was hard to see him be so heavily medicated and watching him endure two surgeries with sedation; crying at times through all the pain, discomfort and weakness.
We were so blessed to be able to bring him home that Friday --scared we weren't prepared-- but ready to begin the healing at home. James' room was ready and updated (God's angels here on earth made that happen so quickly!). When he arrived that night, he slept so peacefully in his own bed!
James has a good prognosis-- and we know he'll beat cancer! The more we learn, the more we feel empowered. Results will be in on day 29th of treatment (last week of August). The biggest challenge is going through the chemo and the side effects James will be experiencing from all the medications he'll be on. He will no longer have an immune system helping him fight infections as a result of the chemo, so we must protect him the best we can.
James will have to be home-schooled for now (if he is able to--he'll miss his friends at OPA dearly). Once we start the "consolidation" treatment in September, we'll know how strong he will feel. A total of 9 months of treatment with 3 years total of chemo maintenance treatment. In the meantime, medications, co-pays, and hospital payments will start to accrue. We created this page exclusively so that we may keep up with those monthly expenses and remain focused on James' well being and recovery.
James is a GIFT to our family as he is showing us what hero strength really looks like. Our older son Luke is also our hero. He is finding new ways to help his brother and ease his pain. He cares so deeply about James that at times we don't know what to say except give him a hug and tell him we love him.
To our friends and family who have reached out to us, we want to say thank you! We know that God is moving mountains for us and God will provide. We find comfort in His Word everyday. He is molding us and preparing us for His purpose and we will continue to give Him all the glory that we see every moment of every single day.
The day will come that we will be on the other side (this too shall pass) and look forward to day we can help a family affected by this terrible disease.
"Mom, I am glad I am a Christian. I have friends that are Christians and are praying for me." ~ James
“For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.” 2 Corinthians 4: 17-18
For more information on Acute Lymphoblastic Leukemia:
ALL is a type of leukemia that starts from white blood cells in the bone marrow, the soft inner part of bones. It develops from cells called lymphocytes, a type of white blood cell central to the immune system, or from lymphoblasts, an immature type of lymphocyte.
Acute lymphoblastic leukemia invades the blood and can spread throughout the body to other organs, such as the liver, spleen, and lymph nodes. But it does not normally produce tumors as do many types of cancer. It is an acute type of leukemia, which means it can progress quickly. Without treatment, it can be fatal within a few months.
We found out last Friday that James' treatment will follow a Very High Risk Chemo Protocol. We were surprised to say the least. We hang on every word that comes out of our Oncologist's mouth and ask many questions. Since the start of this, we have written down every medicine and test result for James. We were told he is doing well. Day 8 coupled with Day 29, determined his "risk" assessment. He's been responding to treatment, and due to a bit of Leukemia cells found on day 29, we were told that he was now High Risk. Some other numbers, such as cytogenetics, come into play in determining what kind of Leukemia we are fighting. Those were good -but apparently not the greatest. We still have many more questions! Since he is considered Very High Risk Pre-B ALL, we will consider getting a second opinion just so that we know we are getting the best treatment for our little guy.
Thank you to those who pray for James, for the doners to this site in support of his long term treatment, to those who bought T-shirts and for those who are a shoulder to lean on. Without our friends who are like family, as well as our family, we would have fallen to pieces. We know our Faith in God will carry us through, and we thank him for all our blessings and victories along the way.
We are faithful that his latest bone marrow from this past Friday will come back negative! We will post that update when we get it.
He's been poked and prodded and has pleaded for certain injections/medications to stop. He'll then take a deep breath and go along with it. He doesn't like shower time much these days. We gently urge him to cooperate and he complies begrudgingly; he's trying to protect his injection sites.
This week marks the 36th day in his consolidation phase of treatment. There are 56 days in this round.
Since his last hospitalization, James has been feeling well at home. It's nice to see have more energy and stability. He's been able to FaceTime his best buddies as well as FaceTime his classmates during school. They were able to say hi and see how James is doing. He truly misses his friends and going to school.
We are so proud of James and his strength during his treatment. He and his brother have been a positive light during the darkest times. Luke has stepped up when James has needed the support only a brother can give. We are so happy that James has a positive outlook and is planning to do some exciting things when he's done with his treatment; we can't wait!
It's a long road-- but we can see the light at the end of the tunnel. We truly believe God's in charge and doing something grand and awesome with our family. We see God's work on a daily basis and we are thankful.
After the first 9 --12 months of treatment, James will have 2 more years of chemo; just not as frequently or intense. They'll consider him cured after 5 years of zero incidents. He'll be 15!
Thank you to all who are assisting our family in ways that we could've never imagined! The assistance has been able to cover some major hospital bills and provided us with peace of mind as we take care of medical copays and medications in the coming months and years.
Love- the Janosky's
James' results are in and he has responded well for the first part of treatment this last month-- .059 MRD (Minimal Residual Disease)-- which is good news that it has gone down from 84% when first diagnosed, .3 on day 8. They want less than .01-- but he is making progress! He is now being moved to what they call High Risk since he is not below the .01 and that means a more intense chemo treatment with chemo in the spine once a week for 4 weeks. He will also be doing a new chemo injection (3 days this week and 3 days next week) and another oral chemo at home for 14 days.
He will be on his next chemo (consolidation) for 2 months and praying for zero leukemia (completely negative) when they do the next bone marrow biopsy at that point. Lots of prayer needed for our warrior James! Prayer for complete remission and for the side effects to be within normal range for the little guy this time around. He has been through so much already and fevers are a side effect of new meds. Prayers that they stay within normal range.
We are now having to deal with some insurance issues and medicine restrictions which can be completely frustrating. We will do whatever we can to get James his medications when he needs them for the success of his treatment.
Thank you for continual support as we continue to adjust to a completely different way of living. Stress is now the new norm for us, but we feel so grateful knowing we have so much support in prayer and help from those who are keeping in touch daily; we appreciate it!
James is feeling good today and is still not very energetic, but he is in a good mood and able to walk without assistance a few steps at a time. He is such a doll and a gift to our family. He has been able to Facetime some of his buddies and loves to hear about all the support he is getting on his page for healing and complete remission.
Many thanks to all who continue to pray and support him in so many different ways!