Thomas played today! Oh, yeah! His doctor and nurse listened to the concert and cheered and we all cheered for them, thanking them for their healing work in his life. It was a crying moment for me and for his nurse. He is here to play and make music and we are entirely and unabashedly thankful. His strength and facility are still returning but he is back!
No throw-up. Can you believe it? No throw-up. I know as I write this my sister is quietly fuming in Idaho, annoyed that we didn’t get Emend sooner. I am fuming too. Thomas has ended up being in a funny category for pediatric cancer; he is a child but is the size of an adult. Many of the drugs prescribed in an adult setting would not be appropriate for the majority of children but they seem to be what Thomas needs. My sister recommended this drug months ago and the docs here did not want to try it right away. Unfortunately, I think I should have pushed a little harder for it a lot sooner. It is incredibly expensive but our insurance has figured out that Thomas has exhausted the majority of drug options. They approved this without too much work on the doc’s part. He has felt nauseous the entire day but no throwing-up. Amazing! He has even eaten today through the nausea. Amazing again! So now he is on at least four anti-medics at a time and it has finally seemed to do the trick. And now we are all but finished. Live and learn, I guess, except in this instance, I pray we never have to put our knowledge to use again.
The girls came home full of funny stories and lots of skills gained. They informed me they already have their Halloween costumes, made by themselves. A tad bit of guilt swept over me with that comment; my mother made all of us the coolest costumes and I very much dislike sewing. But look what they learned despite my lack of sewing skills! I would be happy for them to be the resident seamstresses and from what they made, I think they will be.
Mark continues to recover slowly. Please pray for him. It seems longer than usual but maybe we are getting old and forgetting. It also could be because of the stent placement since he hasn’t had a stent in two years. Whatever it is, he is taking longer to bounce back and feel himself again. We are thinking we will have a quiet weekend.
Thanks be to God, we are experiencing a puke-free evening! This evening is completely different from the last chemo treatment with this combination of drugs. The new drug I fought to get, on Michele’s advice, seems to be working and warrants the headaches from earlier in the week. Relief isn’t adequate to describe my feelings right now as I listen to Thomas and Mark discuss the CIA and Osama Bin Laden. The tension that always accompanies these journeys to the hospital is absent and sometimes it is only in the absence that one realizes the stress of what was there before. Thomas ate dinner and is even contemplating a dessert of peaches. And, oh my, he weighed in at 49 kilos, his pre-operation weight. I gave him a big, fat kiss on the cheek after he stepped off the scale. I was about to kiss the CNA too. She would have been a tiny bit surprised at that!
We visited Esther and Sam today too. We finally got a picture of our baldies and they are so cute. I love the picture and then I feel like sobbing at the wrongness of the whole thing. These two, precious children afflicted with suffering and pain is almost too much to see. Their sweet, smiling faces that never communicate the difficulty suffered make me long for the redemption of all things, the making new of everything, the throwing off of all the sin that weighs this world down. Please pray for Esther and her family; the road ahead is very difficult and scary for both Esther and her parents. We hold them all close to our hearts.
Theo got to tag along today as well. He loves the ‘hos-i-pal’ as he calls it. Titus stayed home with Grandma because I figured Theo in all of his two-year old glory, was enough for me to handle. He is a lovely child but certainly not the most obedient and he really dislikes being told ‘no’. He requires unique handling 🙂 Timothy also came with us, reminding us all of spring break this year. We helped him study for the GRE he will be taking tomorrow and he and Thomas played I-pad games. Thomas has had so much company on these visits – friends, cousins, siblings all partaking in his experience. It helps him when people have a reference for what he is experiencing.
Mark continues to feel not himself BUT he is not itching. Thank the Lord! Which is worse, itching or pain? I think he is weighing out the relative merits of each and thinking right now, at least, it is nice to not itch. I am praying he gets back to himself. Work is very hard to resist.
We made it through another round of medical issues. Just one more round for Thomas and then scans two weeks after that. Five more weeks total. We can see the light and we are panting along, still running but feeling a side cramp coming on 🙂 Pray we can hold on. We are almost there, for this trip on the medical-go-round.
I am a little obsessed with time, as I have already related here, the way it moves in and out of predictable intervals and surprises one with its rapidity and slowness all at the same time. Today we observed many milestones in Thomas’ cancer journey; he completed his five-day treatments today. Thomas’ favorite infusion room nurse was newly pregnant when he started receiving treatment; she is now three weeks from her due date and we said our good-byes as we left today, knowing she will probably be holding her new baby the next time Thomas receives chemo. The urology fellow who followed Thomas after his surgery and helped us through his recovery was a few weeks from delivering her baby when Thomas was finally released. I saw her today as I was walking the baby and we chatted for a bit. Her baby is over six months old. Titus will be one on Wednesday and Mercedes is six tomorrow. Where did it all go?
Thomas finished his five-day by groggily staggering out of Children’s. His friend came along to pass the time but after Thomas received intravenous Benadryl, he was not very good company. I am kicking myself tonight because I should have remembered that the IV form of Benadryl knocks him right out. But I forgot so he spent his night lying on the couch not able to fully celebrate the moment. Our dear friend made us a beautiful celebratory dinner in honor of his completion. Our mouths feasted on the food and our eyes devoured the beauty. After a week of being in and out of the house, a little order and beauty does the soul good. I also received two books tonight by one of my favorite authors, Wendell Berry, that my sister had signed when she recently heard him speak. What a treat! My sister had him sign one to me and one to Thomas. I am not sure Thomas could fully appreciate it in his drugged state but I know it will be a treasure for him when the Benadryl wears off. I have again read his short stories with hunger for the beauty and truth contained in them.
Tomorrow the lady of the day is Mercedes and her sixth birthday. We travel to Denver, the whole lot of us, and Children’s for Thomas to receive his Nulasta shot. My kids think it is a great treat to go to Children’s. It’s the little things in life, you know 🙂
My cousin sent this to Thomas with a poem.
Why are saints, saints?
Because they are cheerful when it is difficult to be cheerful, patient, when it is difficult to be patient, and because they push on when they want to stand still, and keep silent when they want to talk, and are agreeable when they want to be disagreeable.
That is all. It is quite simple and always will be. – Unknown
We think our Saint Thomas is a pretty swell guy. He is still just a boy, with the normal tendencies of a child who is growing up – talking back, sister-bugging, etc… but I see this experience forming in him a depth of knowledge that comes in no other way but the fiery path. I wish there were another way but growth and maturity spring from these experiences. I am not thankful for cancer. As Thomas’ bracelet says ‘cancer sucks’. It is the result of our fallen world and it is to be mourned. It causes pain and robs children of their childhood. But I find myself thankful for the fruit I see in our lives, in Thomas’ life, and it has resulted from this intense time. Do I welcome pain and suffering? I don’t know about that… I am still a fearful child in that respect. As my friend has said before, I welcome Christ and when the pain comes then I know He is not far away, He is with me in an even more tender way.
One more day to go…. Holding on and then we are going to celebrate, not the end of chemo yet, but the end of five-days!!!
Wednesday is the point in Thomas’ five-day treatments that we sigh a big sigh of relief because he is almost to the end. Another day of chemo mixed with a side dose of logic. Thomas has done so well this week and I do think it is because of positive peer pressure and an active mind. Maybe I should have tried this sooner?? The nausea is clearly being controlled more effectively now and having more weight on his bones helps too. He threw-up last night but only once and for him, that is a feat. He has eaten through this course and he just seems happier. All good and all a gift. I took a picture of our little class in Infusion Room 3 but it seems to have mysteriously disappeared. Squares of opposition were the topic of the day and boy was it fun to see and discover the various relationships between different statements and to learn that independent statements are independent for other reasons than living in America 🙂
As Thomas is coming to the end of his treatments, Mark is heading back for help with his issues. The itching has intensified again leaving him sleepless and rather anxious. Imagine your entire body constantly itchy. Not pleasant and a source of irritation and frustration for him on a daily, sometimes hourly, basis. He will be having another ERCP as soon as he can to dilate his bile ducts which will relieve the itching. Unfortunately, the ERCPs seem to be getting closer together which indicates a worsening of his condition. The wisdom of simple prayers like the Our Father comes to me in these moments of thinking about turning from one health issue to another – “Give us this day our daily bread.” Again and again, all we are taught to ask for is today, not next week, not next year. Just today. So, I ask for my bread, for strength and sustenance, for freedom from fear, for patience, for faith to trust even when I feel tired and worn. He is there, in tomorrow and in next year and He has already made the way for us to walk.
Tonight I am thankful for a reprieve from vomit, for Thomas’ happy heart, yes, at times sassy heart :), for food, for Titus, for girls filled up with friends and cousins, for a cool evening, for a new bed, for rain in the air, for all of the love shown to us on a daily basis, for health, for hope, for God’s unfailing and extravagant love.
“…. they both live in America??”
This is my favorite quote from today. Emma, my niece, finished my statement with a perfect ending that made us all laugh and gave our exercised brains a break.
Thomas started the day feeling crummy. I sat beside him and wrote his answers for a bit and questioned myself and my brilliant idea to combine logic and chemo. But as the morning went on, he perked up and started answering questions in spite of himself. We were going to try a new drug but didn’t start it in enough time to make it effective so we are praying he feels better this go around than he did last time. So far, no throwing up. He has eaten better than previous weeks of chemo. I think having cousins around is stimulating to the mind and the appetite. My nephew and his fiancée stopped by and sat in on our little discussion so we were quite a crowd. I know I write it all the time but I am ever thankful for this crazy tribe that is our extended family. Thomas benefits from the camaraderie surrounding him and he definitely feels better when there is something fun to do or someone interesting to talk with.
We were welcomed home with an AMAZING dinner! Cooking is one of my loves but I must say that since January the food on our table has not been very inspiring. A lovely friend from our home-schooling group dropped off such a delicious dinner, I am still relishing it. You are all so beautiful and generous in your care for us. We head back to Denver on our now familiar path. I know I can drive it with my eyes closed but I promise, I don’t.
On another note, my sister, Mary, is in a very dangerous situation with her family in Central Asia. Please pray for their safety and a swift resolution to the situation there.
My brain hurts. Maybe I don’t exercise it enough because after a day of extension and intension, genus and species, defining terms, and looking at the art and science of logic, I am feeling tired. Thomas spent his first day of his twenty-fifth week of treatment discussing all these things with our little ‘class’ that included the nurses who stopped in to join our discussion. The time flew by as we tried to get in as many lessons as possible before chemo finished. Trying to beat the clock is much more fun than watching the minutes tick by. So far, this evening, he is feeling good. He ate today and is enjoying the company of his cousins as they play games and joke with each other.
Tomorrow we head back for more of the same. We are spending the week with our friend Esther and here mom, Sam, in the clinic. She is getting five days of chemo too and it is nice to see the face of a friend when we walk through the halls of the clinic. How I wish we were any place but where we find ourselves, but giving a hug and receiving encouragement is always welcome and I pray that our little families are a ray of hope and light in a place with lots of sadness. We met another family with a sweet four-year-old who has bilateral Wilms’ tumor. It is all hard, just hard.
Our Sunday worship was an encouragement to me as we started this week. Singing and praying filled my soul, prompting me to remember God’s action on our behalf. I am thankful again and again for our fire alarm that kept us from losing anything else besides our bed (we got a new bed yesterday :)) I am thankful for our families who encourage Thomas on this journey. I am thankful for God’s presence in the midst of the pain and fear, not apart from it, in it. He is here with us and He is all we need. I am thankful for all of you who read and pray for us. Thank you for continuing to hold us all up, especially Thomas. We couldn’t continue without all of your prayers and support. Thank you.
How weird that we have been at this for twenty-two weeks. Time. It is a mystery. Thomas had his three-drug treatment today and all went well. We started the day by driving to Ikea. A massive journey just in itself. But as it is just a bit farther south than the hospital, we thought we should combine the two. Or at least, I did. Thomas is not a fan of Ikea and would rather have chemo than go through the store. My sister-in-law, Sheryl and her girls came with us, so it was a shopping party. I am telling you, with a big family there is always a party going on somewhere.
We shopped, ate and headed to the hospital. I thought it was a short day but whenever I think that I should add two hours to the day and then I am about right. The time passed quickly with Sheryl and me chatting about everything: homeschooling, theology, kids, house-building, hospitals, cross-cultural understanding…. I spent time with my friend, Sam, and sweet Esther who was back in the hospital today. We normally see each other at our homeschooling group. Very different to be seeing each other in the cancer clinic but a blessing too, knowing we are both praying for each other.
We headed home and had the worst traffic I have had on the the drive home but at least we all had company. Thomas and Emma are twin cousins, being born on the same day. It was a treat for Thomas to again have someone to keep him company during his hospital stay. Sophia and Clara, nearly twin cousins, came along and sweetly walked Titus while we waited for Thomas to get his drugs.
More throwing up tonight…. Back at it. Someone asked Thomas what he was going to do this weekend while we were at the hospital today. He said, “Probably nothing. I am going to be sick.” He knows now but he also knows that this too, shall pass. That is a comfort as well.
Thomas, Emma and Aunt Sheryl on our favorite floor in Children’s.
Ready to go home from a long outing in Denver, in the lobby of Children’s hospital.