So not good with this now… ;-)
I have promised to post more, but as always, I don’t. It seems that now that Ryan is in remission, it’s just easier to forget about this blog. It was our lifeline to the world for 5 months, and now that he acts like a normal 10-year-old boy, I forget this thing.
Just an update for this school year. In August all the kids started a new elementary school. In a way, this was a good thing for Ryan. It is showing him that while everyone knows him and his story, they were not personally involved with it. So – he is learning while he is a special kid he is not always going to get special treatment. Bryce and Deanna have settled into the new school as well. Both boys wish they were back at the old school, but they have lots of new friends here.
In September, Ryan had his gall bladder removed. I know – how many have heard of a boy having that removed? And while it was being removed, he had another problem stopped (the tumors had pushed his intestines up and they didn’t fall back down). While fixing this, a bruise formed on them and instead of being in the hospital for 24 hours, he was there for 5 days. While there, we meet a 12-year-old boy named Hunter that had just been diagnosed with T-cell lymphoma. Please be in prayer for him and his mother and brother – they have a 2 year road ahead of them.
Also, please pray for Melindy Barrett (and I hope I spelled her name correctly). She is 30-year-old mother of 3 (oldest is Ryan’s age) and she is battling colon cancer. She is doing treatments – so please pray that everything will be fine and her children will have her around for more years.
Xavian Hall (the little baby boy that had a cancerous brain tumor the same time Ryan battled his cancer) just celebrated his second birthday! PRAISE GOD!
Also, in September, I was asked to talk at the Relay for Life Summit meeting here in Jackson, MS (while Ryan was in the hospital). It was hard going there and talking to everyone, but in the end I’m glad I got to go. My speech was from the caregiver’s point of view and after the break, I will post the speech.
No amount of words can express the love that my entire family felt during Ryan’s cancer. I am so thankful for each and every one of you – more than you will know. May God bless you all!
“Ryan has tumors. There are twelve to fourteen of them in his abdominal region – the longest being nine centimeters. And we don’t know what’s caused it.” The faithful words that changed my family’s life. On Saturday, my eight-year-old son had been in the backyard with Troy, my husband, throwing baseball and acting like a normal boy his age. Two days later, on Monday, he is in the hospital getting an emergency CT-scan on his stomach because it was swelling and quite frankly he looked like a pregnant woman. Tuesday (February 3, 2009) we get the results, and by 3:00 in the afternoon, Ryan is in PICU at Blair E. Batson Children’s Hospital because his kidneys were failing. The doctors had an idea what we were dealing with – Burkitt’s Lymphoma. His pediatrician told us that if that was the diagnose and if treatments didn’t starts soon, Ryan might not make it through the weekend. He told us that we should encourage our family from TN to come. Words that no parent wants to hear – your son might die.
One of the hardest phone calls to make that day was to my mother. Telling her that Ryan had tumors and that we didn’t know what was going to happen next was extremely hard. Then calling her and letting her know that he had cancer and knowing that she wouldn’t be able to finish that day at work tore me up. I can’t tell you how Troy told his parents, but I know that by the time we had told our family in Tennessee and our church family at Trinity Presbyterian Church, word had spread about Ryan. That afternoon, a couple of Ryan’s former teachers were there and a lot of people from church. That Tuesday night, Troy and I had so many supporters in the PICU waiting room that no one else could use it. The love pouring from church family members was overwhelming. We didn’t ask for them to be there, but they felt the need to love us that night.
I have to mention that I had not, and probably never will again, see Troy crying the way he did that Tuesday. In fact, we both cried a lot those days. But while listening to Dr. Herrington discuss our options, I stopped while Troy continued. I not only listened to her words but the tone in which she delivered them.I was sure that we would get the treatments that Ryan needed here, but my heart broke every time I saw Troy break down and cry.
That night, Troy made me go home. I had dinner with a friend and she let me vent. I told her one of two things were going to happen. Either God would heal Ryan and use him for His glory or God would call him home. I had to be prepared either way. She later told me that she had no idea what to say because I spoke the truth. And during this time, Troy’s mother, aunt and uncle, sisters, and their children loaded up and drove down from Tennessee to be with us.
Another problem was telling our younger children, Bryce and Deanna. How do you tell a five-year-old boy and a four-year-girl that their older brother was sick and that he would be in the hospital for awhile? How do you explain that everyone’s life is going to change and that Mommy’s primary focus would be to help Ryan more than spending time with them? For that matter, how do you explain that they might lose him?
Also telling Ryan’s classmates and teachers at Flowood Elementary School was hard. Ms. O’Mire’s class was glad to hear from Ryan, but at the same time, none of them thought that Ryan would be so sick and possibly never come back. In fact, no one at that age ever expects to know someone with cancer.
The next day, Wednesday, Ryan is still in bad shape and his stomach is still expanding. The doctors were on hold as no baseline scans can be run while he is retaining fluids. That afternoon was the first time I heard him really talk since this started. He had a ten minute conversation with Mrs. Miele (his former second grade teacher). It did my heart good to hear this, but inside I was torn up. My son would tell me he was scared and he didn’t want to be there and he was hungry, but with Mrs. Miele he was talking about other things and trying to be somewhat upbeat. And one night Troy and I went to dinner while his mother stayed with Ryan at the hospital. I love my husband more than anyone knows, but being married to a geek can be a challenge. His way of coping was to read anything and everything about the situation he could. Troy started talking about statistics and things that I needed to know – things like life spans if Ryan beat the cancer and mortality rates because he had been researching Burkitt’s and if Ryan didn’t make it, what we would do. However I didn’t want to hear them. I knew that God would heal my son. If that healing meant that He would call Ryan home, then I would have to be okay with that. But for some reason, after listening to Dr. Herrington talk about treatments and such, I knew that God would heal him and that Ryan’s life would be used for His glory. And I’m sure that the restaurant workers that night thought we were nuts arguing like we were. But I did understand what Troy was trying to do – he was trying to prepare me (and himself) for the worst case scenario.
Over the next couple of days, Ryan has a biopsy performed as well as having a chem-port and a dialysis port put in. On Thursday – February 5 – we get the results and yes, Ryan has Burkitt’s – a rare form of Non-Hodgkins lymphoma. This kind of cancer has the ability to double in size every 24-hours. By the time we started chemo on February 6, his stomach had reached a circumference of 84 centimeters – 10 inches larger than just 3 days ago. On Sunday they had to run a dialysis because his potassium level was reaching critical levels. And the whole time Troy and I were posting everything on our blog. This way we didn’t have to make a million phone calls and worry about getting something wrong. We didn’t have to worry about leaving the PICU to take or make a call – we could just focus on him.
And during all that I could feel the prayers being answered. A spinal tap revealed that the cancer was not in or around his brain and a bone marrow test told us the same thing. The only thing we did know about the cancer was that was in Stage 3 – meaning that organs were involved. The doctors told us that we could go to St. Jude’s for treatments, but they were not sure if Ryan would survive the trip. They told us about the information sharing between hospitals and that we would receive the benefit of lots of doctors seeing his case, so we stayed. Once chemo started, Ryan’s kidneys started working and the swelling in his stomach started going down. Because the cancer was so advanced, Ryan stayed in the hospital for 35 days the first time. That meant he didn’t go to school but I did have his work and he really did try to do it. But the chemo made him sick and he really didn’t want to do much. However, because we didn’t have cable television at home, Ryan really loved watching TV from the hospital – I knew all about most shows on the Cartoon Network, Disney Channel, and Nick.
My days, our “new normal” as we called it, were as follows – I would get up and get our younger two children out the door (one to school and one to preschool). By 8:30 I was at the hospital so Troy could go to work. Someone from our church would bring lunch by for me while Ryan was stuck with hospital food. Troy would come to the hospital after work the following day to spend the night. I would not return home until 6:30 or so at night. Considering I quit my job in 2000 to be a stay-at-home mother, I had to do something I didn’t want to do – I had to put Bryce and Deanna into an after-school program. And neither one of them liked it after the first week. When it was my night at home, I would try to do something special with them. If they wanted to watch a movie, we would. If they wanted to spend the night with some friends of ours, they would. I didn’t want them to think I loved them less than Ryan, but keeping that from happening was extremely hard.
When Ryan got out of the hospital after the first long stay, it was a cause for celebration. We knew that he didn’t have an immune system because the chemo had taken care of that, but we also wanted him to do some things he wanted to do. And the first place Ryan wanted to go was to Flowood Elementary School to see everyone there. Of course we took precautions – Ryan had to wear a mask while we told his classmates they had to stay back. Everyone at the school was so glad to see him. And so our routine continued – hospital, home, hospital, home. Any time he got released, he would want to see his classmates or go to a baseball game. So that’s what we did.
Somewhere during all this, I received a call from the American Cancer Society. They asked if Ryan would like to be an honorary chair of that year’s Relay for Life. We said yes, and it just so happened that Ryan was out of the hospital for a stint at home so we could go. He was still weak, but that was okay. He had his mask and a wheelchair, but he didn’t want to miss the relay. His classmates even raised enough money to get him a torch which he thought was cool.
The next thing after the Relay for Life was Camp Rainbow. Ryan had completed all his scheduled chemo and he really was looking forward to going. But considering that he had seen me everyday since the start of this walk and had been through so much, he didn’t stay the entire time. He did tell me all about his daily activities such as the Redneck Super Slide.
Here we are now over a year from the amazing “Remission” word. Ryan is back in school with the rest of the kids his age (thanks to his 3rd grade teacher working with him all summer). He is playing baseball, in Cub Scouts, enjoys hunting and fishing, things you would expect from any other 10 year old. We are so thankful for the support of our family, church, Flowood Elementary, Candlelighters, the community, etc. This is a situation that no one wants to face at all and shouldn’t have face alone. The organizations that helped us were amazing. Now that cancer has touched our lives, we understand the need that they fill.
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