Diagnosis: Very High Risk Pre B Cell Acute Lymphoblastic Leukemia. Ryan is the highest risk group for Leukemia because he did not go into remission on day 28 like 95% of kids do. Which drops his cure rate to 75-80% and relapse rate 20-25%. Ryan did go into remission by day 60...praise the Lord! His leukemia is on the B cells not the T cells.
We were just living a "normal" family life in Decatur TX (we had just built a house there and moved there from FW 9 months before Ryan was diagnosed) where Ryan went to daycare and my two other boys (jack 9 and Christian 13) went to school. I worked as a respiratory therapist at Baylor all saints in the NICU and also at wise regional in Decatur. My husband Matt owns Mims HVAC. We didn't have any roots yet in Decatur so when Ryan was diagnosed with Leukemia in February 2016 instead of half of us living in the Ronald McDonald house and half of us staying in Decatur we decided to sell our home and get an apartment in FW back where we used to live. We would drive jack and Christian back and forth to finish the school year in Decatur twice a day everyday to keep some type of stability in their lives. Gas was another large expense for us.
Ryan was diagnosed with acute lymphoblastic leukemia on 2/17/16 after I noticed bruising and him not wanting to play as much. I urged the dr to do bloodwork and we were sent the very next morning to cooks. My head was spinning. I think I may have fainted at one time once the oncologist actually told me what was going on. Treatment started right then. Ryan went from standard risk to high risk in a matter of eight days because the chemo didn't kill as many leukemia cells as they do in most patients. He then went from high risk to very high risk on day 28 because he didn't go into remission like 95% of children do! All of the stats I was given at the beginning of treatment changed dramatically. He went from having a cure rate of 95% to now 75%. People don't know this. They think leukemia is a "good cancer" but there is no such thing. RyAn has to have extra phases of chemo and three to three and a half years of treatment all together.
Ryan had aggressive treatment for a year and we are now in maintenance for the next two years. our family and outlook on life has dramatically changed. I'd like to say for the better but I know we were good people before so I believe it's just different now, we are more aware. I am grateful for our new perspective. We have been blessed thus far In being able to afford our bills but because we have cobra it doesn't last forever. It ends June 30th and I can not get an extension because we do not qualify for SSI. That's ok though because we can still get insurance but the deductible will be the 8500$ a year which we will hit very quickly. Ryan did end up reaching remission on day 60 but he is still considered very high risk with a 25% relapse rate....if that was to occur (I pray so hard it doesn't) we would have to start all over and possibly do a bone marrow transplant.
We have been offered many things to be able to do through different charities but ddidnt ever get to do them because Ryan had been neutropenic this whole past year. So we have been in social isolation for a year. Now that we are in maintenance that has changed we just can't be around people who are sick or in large crowds.
Present Condition: Ryan is in remission! He will have to stay in remission for ten years to be cured. The next two years will include a week of steroids every month in pill form, chemo every evening and on thursdays two chemos, chemo in his port at the hospital once a month, gabapentin twice a day for nerve pain in his legs from the chemo, spinal taps every 6-12 weeks where they insert more chemo, play therapy with a therapist for anxiety and anger, if Ryan ever gets sick with a fever for the next two years that will include a hospital stay. He also takes a preventative antibiotic called Bactrim twice a day three days a week and will be immunosuppressed for the next two years. That means that an every day cold for you or I could be a hospital stay and possibly a very scary situation for Ryan. Besides that he is a normal playful four year old who thinks this is normal. He thinks everyone had a port when they were little and he knows the hospital helps him because when he is in severe pain he begs to go to see the Dr.
Day in the life: Oh I kind of already touched on that above but Ryan is a very smart determined boy. His favorite part of each day is picking his two older brothers up from school. Jack is 9 and Christian is 13. They have been amazing as this hasn't been easy on any of us. I know Ryan is loved and supported by many people near and far even though I still keep them a safe distance because of his suppressed immune system. Ryan's dad, my husband, has taken on the role of sole financial supporter and I know he holds a lot of pressure on his shoulders but is always there for Ryan and our family.