“Stop Mom! We need to look at the beautiful fountain.”
So, a month ago we let you know that Trystian’s oncologist was increasing his chemo intake in an effort to suppress his immune system a bit more. Well, we found out today that it worked.
A little too well, in fact.
His blood cell numbers were way down today, to the point that his doctor has taken him off his chemo pills for the next week and having him come in next week to be tested again. This is a pretty significant change — he normally would just be staying the course and coming back to the clinic in a month.
It wasn’t a huge shock to us; he’s been saying “my tummy hurts” for a week and has been getting tired pretty quickly lately. We knew something was up, just not what. Now we know.
Trystian also got an infusion of vincristine today, and he’ll be taking dexamethasone (a steroid that makes him incredibly moody) over the next five days. Those combined with the anxiety of waiting for next Thursday’s test results probably will make this a pretty difficult week. Prayer is appreciated.
Doing normal people stuff in the midst of abnormality.
It’s been on my list of things to do for a while now to write an update on Trystian, and yet I have always seemed to be able to find some reason why I don’t have time to write. Funny how easy that is to do. I mean, don’t get me wrong — we’re busy. But if I’m being totally honest, there’s probably a bit more to it than that.
When I started this thing just a few days after Trystian’s diagnosis, everything was happening so rapidly. Within a few hours of the bad news, he was getting his first blood transfusion. The next day, he had a PICC line inserted, underwent his first spinal tap, and later, received his first chemo drip.
This was in the first 24 hours. As a parent, it was like trying to get a drink from a fire hose.
Because we’re so blessed to have so many people who care about us and our son, it was a little overwhelming trying to keep everyone up to date in those first few days. It felt like everything was changing by the hour, so we needed a reasonably efficient way to pass along information. I suppose we could have just used Facebook … but again, if I’m being honest, I really needed a place to be able to process my own roller coaster of emotions. At the time, I felt like I could talk to everyone and no one about how I was feeling, so I did what I do. I wrote, very publicly sharing all the things that I was having such difficulty talking about privately.
But at some point — and it’s really hard to figure out exactly when it was (I’ve actually thought about this) — doing these updates became less integral. At some point, we shifted from crisis mode to living-at-home-with-a-kid-with-cancer-OH-MY-GOSH-WHAT-DOES-THAT-EVEN-LOOK-LIKE???? mode to yeah-another-appointment-with-the-oncologist-yeah-he’s-doing-fine mode.
We (mostly) stopped worrying about death and (mostly) just tried to figure out how we were all going to live.
That meant living with cancer, which, of course, is super crappy. But you’d probably be surprised at how quickly that becomes rather mundane. It obviously has its awful moments*, and I do sometimes pause and reflect on the conceptual craziness of cancer, my son’s mortality, etc. But all in all, it just sort of is what it is. It’s our new normal.
*Holding your son while he goes limp after being sedated is one; giving your son an injection of chemo at home — in which you’re asked to put something into his body that is so awful they actually give you a haz-mat cleanup kit just in case you spill some on your floor — stands out as another; shaving your son’s head because his hair is falling out in clumps is yet another.
I’m actually really thankful for that, believe it or not. A person can only handle so much crisis, and because Trystian’s treatments have gone more or less as expected over the past 11 months, we’ve had the relative luxury of living in a way that is much more normal than the way many other cancer patients’ families are forced to live. We know others aren’t so fortunate.
This also has a lot to do with Trystian himself. He’s an amazing kid who faces every challenge thrown at him like a champ. Sarah has documented a lot of that stuff in previous posts, but the big takeaway is simply that whenever we ask him to do another stupid cancer-related thing, he usually smiles. Sometimes, when he takes his chemo pills at night, he’ll eat the pill and the dab of yogurt off the spoon, grimace as he swallows, then smile and say, “That was DEEEEEE-LICIOUS, dad!” Seriously, who does that? And his hair is growing back so beautifully. My head knows that’s just a silly cosmetic thing, but my heart appreciates it.
Lately, things have been slightly less normal. Trystian has been fighting some kind of virus for a while now, and it’s been screwing with his blood counts. (At least they think that’s what’s doing it. We can never be sure.) They’re getting close to normal, which surprisingly is a bad thing right now. The chemo pills he’s taking at home actually are designed to suppress his blood cell production — the idea is that if his body goes into full-blown blood cell making mode, it might start making the cancer cells again, too. So his oncologist has increased his home chemo doses to try and bring them back down. Please pray that this does the trick.
I’ll leave you with one more thing. This is a great story about a college basketball player who was diagnosed with A.L.L. (the same kind of cancer Trystian has) when he was 16, and is nearing the end of his treatment. He played with leukemia this past season as a freshman. It’s a tremendously powerful story, and provided some much-needed perspective for me. Although Trystian speaks well for a 3-year-old, he’s still 3, which means he doesn’t always express how he’s feeling very well — sometimes he says he doesn’t feel so good, other times shrieks in my face, other times he just punches his brothers. (Shrug.) Trystian also doesn’t really have any frame of reference for what things were like before cancer. Ray King can speak to that, though, and I have to imagine that the only real difference between him and Trystian is the ability to articulate the experience.
Although some of the details are different (Trystian wasn’t in as near as bad of shape as King at the initial diagnosis), the story paints a pretty similar picture to what Tystian has endured — it was completely bizarre to me to read King’s treatment protocol and know exactly what each of the drugs he takes are and what they do. So if you’re curious about the details that we might or might not have covered on the blog, this story is a good place to get a general idea.
The afternoon after, Ray has to miss practice to go to the UNC Pediatric Center for a checkup and his monthly injections of the chemotherapy agent vincristine. Every two months they add a spinal tap to check his bone marrow and shoot some chemo into it. In addition, Ray takes anywhere from 24 to 40 pills per night—methotrexate, 6-MP, prednisone, scepter. It’s maintenance chemo, not the stuff that made him throw up 100 times last year, but it’s still poison. On top of aerating his immune system, the chemo messes up his brain. He’s doing OK in school—three Bs and three Cs this semester—but Ray has trouble remembering his team’s plays.
Trystian takes far fewer pills (presumably because he’s smaller), but the protocol is the same. I hope you read the whole story. It’s long, but well worth your time.
Oh, and I dare you not to cry when you get to the story of his Make-A-Wish. I just read the story again. I knew what was coming and I still couldn’t do it.
Until next time (which hopefully won’t be another four months), here’s a video from this week as he plays with some toy tools that he got at the doctor’s office this week. You can see the band-aid on his back from where he got the spinal tap, as well as the port on the right hand side of his chest. He said he wants to build a bird house, and he really gets into character with the positioning of his jeans:
Yesterday we started maintenance. I was surprised at the range of emotion this held. In order to do this we to choose if we wanted to keep Trystian to stay on a study or take him off. If we already decided why is this hard? Because at this point things change. The normal becomes randomized. He won’t get the same treatment as all other kids. It (for him) means getting morechemo than other kids in 3 other groups.
I am really having a hard time with it. He seems ok today. A lot of sleeping after treatment yesterday. He is actually getting less meds than he did in the last phase. It is all so weird to try and follow. We are given a a calender for every single day there is a battering of medications listed and doses. We were so excited to fins we will only be in clinic every-other week now. I feel totally deceived. We are in clinic only every-other week…true! We have just as much going on with all his meds though (more). He has at home for the most part only had meds 2 days a week. There are times when it is prescribed and we have to do more, but nothing like this. I cried because I became totally overwhelmed with the schedule. We also find out during this time if any of this is working. the time between the clinic visits and the lower doses are to see if his body will make healthy cells on their own or if his cancer is still ruling. FUN RIGHT? They gave us a finish date. AUGUST 1 2015. As long as we have no hang-ups. We are planning a HUGE celebration for this date. I work hard to protect Him. I believe he is doing well because Jeff and I work so hard to make sure he doesn’t know all the changes that have to be made to make this life work. The hurt that comes along with making these choices are so layered we have yet to get to the center. We never know we have another layer until it it heavily laid atop.
Friends have become a distant memory as some have crossed boundaries and insulted our choices. Family has drawn closer. Tempers are hotter and fuses are shorter. The ability to function each day depends on a moment. Never knowing where that moment is can be maddening. I think anger would be the honest overall emotion. He is angry a lot. We as parents are angry often. Our almost 6 year old has been a champ, but he knows. He understand things are never normal. He is still away from home as often as he is home. there are times where I am determined to keep him home and I am not sure they are always the best choice.
The ability to cry out to God has become my strongest. I cry out in fear and relief I cry out in joy and thanksgiving. I know weird, but we have so much to e thankful for. We have a son who is trucking along. It sucks!, but he is still making it. I have a job I really enjoy. NO, I LOVE it. I find so much release and please in doing what I am sales and working with people. I am SO thankful for a boss who see’s through a different lenses and encourages me to take care of my family first and job second.
Fine is so relative and that is the truth. Fine is that answer you give that means I don’t really want to talk about it. It means I am doing really well with pushing down the hell of all of this and today I am choosing to keep this fake smile on my face. He hates it and we hate it and all around this phase SUCKS, but he is making it through and you know what? THAT is wonderful. We have each other and each new day is a NEW day. He loves us again in the morning even if he is throwing things at is and saying he doesn’t love us in the night. He sleeps long, but can;t fall asleep well. He is sick often and can’t decide on what he likes to eat to save his life. His head is cold often because while my hair is growing back his…isn’t. We are taking on new ventures as a family to stay afloat and I am happy he can help. Today we are making toffee and he will help do this. I am thankful he can do the things he loves and he hasn’t been robbed of this. Update done.
Shock! I knew my little boy had been shedding the broken pieces of his hair, but I
I love this boy and his illness drives me to health. I want to be the best me for all of my sons and my husband.
wasn’t aware things had turned a corner FAST. He asked me to “get those hairs off my face Mommy.” He has said this before. What he really wants is for me to run my hands through his hair and scratch his ever scratchy head. I ran my hands through his hair and came back with a fist full of hair. He stayed awake all night last night saying his knees, stomach, arms, and body hurt. I wanted to say say “I know buddy Mommies heart hurts” but I just held him. I held him in clinic today when they said his blood work was “abnormal” and again when they asked us to get a chest x-ray. I held him when we got home I cried as hid fast shedding hair covered my face. My husband came home and we decided he didn’t need to spend another night covered in his hair and itching. His issue with his blood work is simple and we just have to be careful to monitor him. I care and am deeply devoted to the people in my life I love. For today that alone was my focus. All other things fell to the wayside, yes even all my wonderful weight-loss tools. Guess what? I lost 2 lbs. Ha HA HA ha goodbye hair. Be a healthier you now.
He says no thank you—to chemo. He calls the nurses sweetie when they stick him with the “butterfly.” He calls me little lady when He is mad. He is our joy and we love Him. We have 3 boys and each hold a special place in our heart. When I found out I was pregnant with Trystian I was so sad he wasn’t the little girl I wanted. I was sad we were having a baby because I had other things in life that did not allow for a baby. I was also feeling inadequate. I let myself believe I was broken and not gentle enough to raise a girl. I was so wrong. God had given me the chance to gently raise a tender heart—in a boy. He has shown me what the difference between sensitive (Joshua) and gentle (Trystian) are. Trystian has every intention of helping( cracking 7 eggs into a bowl on the floor in the kitchen). He is genuinely hurt when he finds you didn’t appreciate that help. He is hurt when in steroids cause you to lose it. He wants to love and be loved! I am amazed watching him grow through this. Yesterday he told all the staff in clinic what he did over the weekend. Golf, fishing, picking apples in the woods, “we did it all together” he told them. He actually set up flower pots with my Mom and hit croquet balls into them. GOLF! He took the fishing pole around the house, dropped the line, and reeled it in. FISHING! He walked through the wood pile to the apple trees and picked apples….you get the picture. This kids has a way to take isolation from his sick brothers and make it a weekend get-a-way most people would love to have. I love my little man and he loves his Little lady Mom. <—That is what I am now titled which I think is best of all.
We blog about Trystian and how he is doing. We talk about our feeling and the changes it has made in our lives. What we haven’t talked about—couldn’t talk about—didn’t know about, was the change of vision cancer has on your life. You are around a lot of children with cancer. You hear terms like A.L.L and it doesn’t mean: to a complete degree or to the full or entire extent.— it means: Acute lymphoblastic leukemia. A twist is no longer a funny dance or a turn in a strory it is an added form of cancer to what is already there. Last week we met little Jessalee. She has ALL with an MLL twist. This is not good. Our friend Emma had a twist also (our details on this have been varied). Emma went to heaven this week and trying to explain this and keep hope that it wasn’t going to happen to Trystian was too hard. I couldn’t do it so I told Joshua she was feeling much better now (she doesn’t have cancer where she is). Is this wrong? I am lost when it comes to the all enveloping world of cancer.
There was so much hope and trust in the treatment when we started. When we go to clinic we find out how fortunate we are to “just have ALL” and no twist. No “tumors” (although they can be pretty treatable). No “rare form.” What we also learned is they can show up at any time. I don’t sleep the night before a spinal. When cancer is found in the the spin the Dr. said “there is very little they can do.” The bone marrow aspiration is the same thing. If cancer is found there a twist (a new or different form) may have formed. What like the same dress just a different color so while the shape might be right for you in the wrong color it just does bad things? These things make my head spin. I got a call yesterday that in my pre-diagnoses world would have just meant pray (it still means pray) but, now I pray different. I know that my Uncle who was diagnosed with MLL has a uphill battle. I know as an adult this is going to be rough. I know my heart hurt different when I got this news. I no longer have an untainted hope.
I lost my sister and her husband to a car accident on Feb. 6th 2004. I prayed over my brother in-laws body in the hospital and believed with my whole heart he was going to live. What I have come to understand is that wasn’t the plan. Him living would not have been wonderful. He would have been in pretty bad shape—maybe forever—and his wife would not have been there. This shook me and took me years to grab onto. I feared there was something I could have done. I different prayer. Every time someone was sick I thought if I prayed and felt peace it meant they were going to pass away. Some times the peace means it is not my responsibility and in life we do all we can.
Cancer scares the hell out of me. It is bi-polar. Up one day and down the next. When it is up it is fast and aggressive when it is down it lies there like an unassuming animal just waiting to pounce. I have hope still. I do! My hope is just different now. My hope is that I not grow tired in doing what is needed
Gal 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
That I will continue to serve others in the time I can and serve my family tirelessly in this time of need. Each day Trystians food desires change. My hope and prayer is that I am always willing to figure out what he will eat a bit of. It is important he has strength. more important than my level of irritation with his ever changing desire for different food. My hope is that when doing radiation and feeling not so good my Uncle will be covered in our prayers and we will take the time to bring his family a meal as so many have done for us. That I will always show gratitude for all that has been done, but not be filled with fear that because some have helped I should not ask for help again. I could write on and on and on. What I will end with id please pray. Pray for our family as this stupid cancer seems to me physically eating us all up right now and now has extended past Trystian and we are now fighting for another member of our family. If I don’t ask for help it is because I can’t. i just am not good at it and am not sure what will actually help. I no longer tell people we don’t need help, but just in the way that I won’t reject it when it comes. I still just feel a little awkward….for now that is the end.
Shortly after we were given the news of Trystians’ diagnosis we were bombarded with resources. Some were helpful and some were just noise. It really depended on the time of day and how he was responding to everything. Mostly it was just a dark cloud, enveloping your whole body, squeezing the life out of you, and daring you to breath. We did though! We breathed and the dark cloud dissipated. What we came to understand is we had been on this ride before. TRAUMA—same ride different operator. We were going to make it through this. There will be hard time, but guess what? THERE WILL BE JOY! We all still have the ability to laugh—and cry, oh can we cry.
Yesterday we laughed. Through the encouragement of some friends, Dr.’s, and a nurse or FIVE we started to use some resources. Trystian was referred for a *~***Wish. Yesterday he met his wish granters. He was scared (he is just afraid of anything new right now) and then he was elated. Lou and Nikki brought him a gift.
He was a shy when opening it, but he was off his rocker when he figured out what was inside.
“It’s Thomas and the island of Sodor.”
He loves his friend Thomas and now new friends Nikki and Lou. Nikki set up his track with him and Leo asked him a few questions. We have it all on video, and we laughed.
Well, it’s about time for another nuts-and-bolts update.
Last Thursday brought the “induction” portion of Trystian’s treatment to a close. In some ways, it felt like just the first few steps of what is a many-mile journey. But we’ve been told the most intense part of this is the first few weeks, and we were able to make it through that relatively unscathed thanks to the great care at Mary Bridge and the support of friends and family.
This past week actually has been the best one since Trystian was diagnosed. He hasn’t had to take any of the oral steroids since Wednesday, which tasted awful and were a point of serious contention every 12 hours. As a result, the tremendous swelling in his cheeks and belly has already started to go down, his mood swings have become less frequent, and his appetite is approaching something that you’d consider normal at this point. All of those things are really nice.
We expected yesterday to be rough, as he had his port surgery. The word “surgery” always is a little scary, as there’s no such thing as minor surgery, but all things considered, Trystian is doing very well. He had a tough time coming out of the anesthesia — no shock, considering how poorly he came out of it after hernia surgery in December — but other than that, he’s getting around pretty well. The hardest part is keeping his activity level low so that the soreness doesn’t elevate. But he hasn’t been begging for the codeine to manage his pain, so that’s positive, too.
Along with that, Trystian’s PICC line was removed, so no more maintenance on that.
We now head into the second phase of treatment, called “consolidation.” He’ll still have once-a-week visits to the oncology clinic for the first half of the month, but to supplement that, he’ll be taking some oral chemo each night. Apparently, this is the drug that most likely will cause Trystian to lose his hair. Not looking forward to that at all, but on the bright side, I’ll be shaving my head with him and I need a haircut.
Through it all, his spirits have been pretty darn good. Trystian still wants to go outside and play baseball all the time, although he gets tired pretty quickly. However, the reduction in medication over the past week has allowed his personality to shine through again. He’s been following me around a ton, trying to help. He loves to help, and I know it’s doing his heart a ton of good to feel up to doing that again.
If you’d like to know how to pray for us right now, go ahead and pray for the first accessing of the port to go well on Thursday. If you’re unfamiliar with how ports work, just know that it involves numbing the skin where the port is located and sticking in a needle. We’ve been told the first couple of times can be rough until they get used to the process.
He is ok! He had his port placed today and my heart still struggles for what is right. I love him so much and want him to be better. I know this is a process and there are two of us making choices for this awesome little man. We together prayed and together know God is in it all—when we ask Him to be. He is here with Trystian through this process and will be there when he is clear, clear of cancer and of the medicine that roughed his body up to get rid of the nasty stuff. I don’t love medicine, but for today I am thankful God gave a brain the ability to see past me and others who think like me to rid the body of the illness and then work on healing from there. I am aware he will need to be healed from the medicine and we started from day one, but we are so thankful He is here with us to be healed—even if getting it seems to me I made him more sick as well as started the healing. So I struggle, but we are ok. DO NOT tell Trystian he is “ok” though. He is NOT ok in his words. LOVE HIS HONESTY.
