So the thing I’ve missed most in the last 12 days since we’ve left the hospital is the Wi-fi. The hospital Wi-fi cannot be beat and let’s just say things at the Ron Don are not even in the same decade (or three). Everything done on the computer is super slow. The upside of this is that Allistaire can barely watch anything on her iPad because it takes so long to load to begin and then stops repeatedly to catch up on the loading and since I’m working on cutting out such passive activities, this handicap is quite handy. The down side is that things like writing a blog and loading pictures, take far longer as well. In twenty speedy minutes I can have seven pictures loaded up to the blog. Other great things about leaving the hospital are being able to do laundry in your own space, making it a far less epic event, not having to pack clothes for five to six days at a time, and more significantly, having privacy. Oh the glories of being able to walk around in your pajamas and not having to close the door when you go to the bathroom. While I am so thankful for the reprieve from people inundation, it proves to be a bit lonely too after the non-stop throngs of people who come and go in your space every day. Allistaire and I are trying to figure out how we live this limbo life of being cast (thankfully) out of the hospital, but not quite landing at home.
Last week’s clinic appointments started with a pretty cranky attitude on my part. Everything is new and the people are mostly all new and certainly the way things are done is all new. I had grown quite comfortable in my little routine at the hospital and pretty much knew everything I needed to know to make it smoothly through the daily goings-ons. It’s like leaving home and moving in with a new picky roommate who just wants you to do things their way and is not particularly yet enamored with you. So we are learning the ropes over at SCCA. At first I was quite annoyed that children being patients as well, seemed to be a point mostly missed. It is a very adult oriented world over there. Maybe the best part though has been the half hour or so we wait each time for Allistaire to have blood drawn for labs. We sit in a room full of adults in varying stages of cancer treatment. There is the construction worker fellow in multiple shades of camo who is in awe that he has had to do chemo for five weeks already for his esophageal cancer. I’m thinking, “Buddy, five weeks is a breeze.” But we were both in awe as he described the crazy surgery he has to look forward to in a month where they remove his esophagus and recreate a new one out of a variety of tissues. There are the old men and women with canes and wheel chairs and long drooping ear lobes. There is the mom from Arizona who is here to support her daughter who has already had two transplants and has her cancer back again. We are all in it together, but I tell you, it is quite the sight to behold when a cute, now pudgy, bald-headed little girl comes walking in that room. There is this magical effect that says, you know what, know matter how bad you have it, look here, this little one is walking the same road, mangy Doggie in hand, so cheer up and buck up. What a strange and lovely camaraderie cancer creates.
The bumpy start was in large part due to my desperate desire to have Allistaire’s night-time hydration fluids decreased. She left the hospital with an order for one liter (1000ml) to be given overnight over the course of 12 hours. I have never changed so many diapers or washed so much laundry. At 84 ml an hour, she was literally peeing through everything and this despite the fact that I was already purposefully changing her diaper at least 3 times every night. Like a drug pusher, I thrust the water bottle of half juice, half water, into her face over and over throughout the day. I have now nailed down the fluid goals that have to be met if she is going to get the required 43 ounces (about 1,275ml) in each day. Breakfast requires an 8 oz cup of milk, followed two hours later by a four oz cup of juice and water mixed with her phosphorus and potassium supplements. At lunch she needs another 4 oz cup of milk and before nap her 10 oz water bottle needs to be empty. This essentially gets repeated after nap with the exchange of some yogurt that gets counted as half fluids. It’s crazy but I am determined to get off this IV hydration. We are thankfully down to 150 ml given over two hours and I’m hoping that by Tuesday’s clinic appointment, I can show them four straight days of meeting her fluid goals and have them agree to cut the IV hydration all together.
Exercise is my other big goal for Allistaire. We buy groceries in tiny increments so that we have a reason to walk next door to Metropolitan Market nearly every day. Lots of times she cries the whole way there and sometimes the way back too. I look cruel, with my crying bald-headed girl trailing twenty feet behind me. I wouldn’t normally shop regularly at such a pricey grocery store, but the journey to get another banana (to kick up her potassium intake) or an Odwalla C-Monster is well worth it. We’ve also started walking the stairs. We get her prescriptions at Children’s and so we always walk up and down at least two flights of stairs. At clinic we get off one floor early and walk the stairs the rest of the way up. Imagine the wailing of a three-year old in a stairwell. Rough. I recently noticed she favors stepping up with her left leg and that her right leg is much weaker. Now I’m having her intentionally step up with the right to improve its strength. Even though it is really hard for her, I think she is making progress. She no longer walks on her tip-toes and hasn’t complained of the pain behind her knees for quite a while. It seems time in bed had more of an impact than I realized. The “drop ankle” effect of sitting or lying in bed, dramatically tightens up the achilles tendon, which in turns results in the tip-toe walking in an attempt to prevent the painful stretching of the tendon. We park further from the elevator than I normally would; we find the little ways to add exercise to our daily life.
When you can’t touch dirt, grass, sticks, rocks or plants, there’s not a whole lot you can do as a three-year old. When you can’t be around anyone sick or crowds or groups of children, there’s really not much you can do. Finding things to occupy our time that are within the realm of what is safe for Allistaire right now is very challenging. Being in the apartment all day gets old fast but alternatives are limited. Fortunately, we are working on a bit of a routine that makes life more predictable which is so welcomed after endless weeks of the unexpected. On Tuesdays and Fridays we go to clinic which involves labs followed by an appointment with the nurse practitioner or physician’s assistant and the attending doctor. Once a week we also meet with the nutritionist. These appointments fill up the first half of the day, so that when we get back to Ron Don it’s really just about getting lunch and then down for a nap. We do baths and grocery store walks in the evening. We have been enjoying regular Wednesday morning visits from my sister-in-law, Briana, my niece, Lucy and nephew, Elijah. It’s great to see the cousins together! We then head over to the hospital to do a dressing change, which provides more opportunities for walking. As of last night, Friday night, I think we are going to start movie nights where we cuddle together on the couch with Redbox. On either Saturday or Sunday, my folks come over for the day to give me a break and hang with the little lady who is working on not having an epic fit when I leave. Her sweet face is hard to resist and turn away from. On whichever weekend day the two of us are together, I think we’re going to lay low and feast on pancakes. This leaves a day or two for other activities. Thursday I took her to the Flight Museum where she really did love looking at all the planes and climbing in the cockpit of a few of them. She also took about three flights of stairs – yeah! We’re slowly figuring out how to make the most of our time in this new in-between world.
Allistaire’s meds continue to be monitored very regularly. Her labs test for levels of tacrolymus, one of the immunosuppressants, and voriconazole, an anti-fungal. The metabolizing of one impacts the other so I often gets calls from the nurse to adjust the doses of one or the other. Labs also look at electrolytes which are “wasted” by the kidney’s as a result of the tacrolymus. She gets supplements of calcium, potassium, phosphorus, vitamin D and a multivitamin in addition. The only med that has been discontinued is her budesonide which was for her lower intestinal tract. It seems, because she is not having any diarrhea, that the GVHD maybe on the mend there. As of last Saturday, they have begun her prednisolone (the liquid form of prednisone) taper, which is her primary and systemic immunosuppressant. The prednisone, a steroid, is responsible for her now enormous 18 kg (nearly 40 pound) stature. Her cheeks and tummy are enormous. It makes you crazy hungry and redistributes fat. Wow, she looks different. You also hold onto more fluid. The taper is extremely slow, going down 10 percent every five days. I believe this is more for the purpose of slowly lifting the suppression of the immune system, rather than for issues of withdrawal. At this rate, she would not be off completely until mid-September. However, it is entirely possible, maybe even likely, that her GVHD will flare up and we’ll have to take some steps back. I have no illusions about this. The son of one of my friends is still trying to taper off of his predisone nearly two years post transplant. Two other girls I know are 10 and 16 months post transplant and still working on their taper. Apparently it is unnecessary to have no remaining symptoms of GVHD to begin the taper. While a fair amount of Allistaire’s tummy pain seems to have disappeared, it’s still there every now and then and she has waves of redness in her face (seen in the first picture below). GVHD however, may not be the only cause of these symptoms which could be the result of some of her meds. The tummy pain could even be a bit of lactose intolerance developed after transplant as a result of the flora getting all whacked out. I guess this is common. Dr. Bleakley, says that the downsides of steroids, make it the best course of action to begin backing off. If she has a flare up of GVHD (which often looks like vomiting, diarrhea, or refusal to eat) we can just go back up a bit on the steroids. “This is not a failure of the plan,” she says, “this is the plan.” That was a helpful perspective. Her blood counts are doing great. Typically her platelets are somewhere around 200. Her hematocrit was an amazing 44 on Friday. That’s right Gregg, even Lance Armstrong would be jealous! Steroids made her neutrophil count jump to over 12,000 and her Bactrim, causes it to drop resulting in ANC of just over 8,000 yesterday.
Overall, we are doing well. Allistaire is gaining strength and getting used to our new life. When life has felt so out of control in such intense ways for so long, ordinariness and routines are so soothing. It is like having your anxious forehead stroked with a calm voice. Patterns, routines, cycles – so helpful. Also such a gift for Allistaire to have regular time with her Washington Murphy side of the family. She had a wonderful time today with her Nana and Papa and was full of glee when I returned home. It is a joy to see her so happy – in fact this is the happiest I’ve seen her in the last several weeks.
One sad break in a pattern is that I was unable to greet sweet Solveig yesterday morning on her 7th birthday. Traditionally, I wake her to a special breakfast and then we spend the entire day until late at night together. Thankfully, she had a great day regardless, starting with a breakfast with Sten at the Western Cafe complete with Happy Birthday singing staff and patrons – this much to Solveig’s immense embarrassment and delight. Then she had the joy of spending a chunk of the day with her cousins, Haaken and Per, and Aunt Jess, checking out all the wonders of the Museum of the Rockies. The day wrapped up with time with daddy at the climbing gym and then parmesan fries and a hamburger at Ale Works with Sten and Haaken and Uncle Peder. Sounds like tomorrow there will be an Anderson party up at our house as well. Today she and Sten enjoyed the lovely Sweet Pea Festival, including the parade down Main Street this morning. Yep, just like her mamma, she was in a parade. (For those of you who didn’t know, I was once a Bozeman 911 Dispatcher years ago and enjoyed my own fame riding on the top of a fire truck down Main Street, probably in the same parade now that I think about it.) I am looking forward to spending my day with Solveig when she comes next week…
Believe it or not, this time next week, God willing, I will have completed my 25-mile Obliteride to help fund cancer research at Fred Hutch. Even though I’ve exceeded my fund-raising goal, I assure you, it is neither too late to donate, nor will the 10,000 plus dollars quite cover the cost of the needed research…SO…what are you waiting for? Click the link below to connect to the Obliteride page and help little people like Allistaire, and big people like the old sweet guy with the droopy lobes, or perhaps do I dare mention, people like you and I who are maybe not so old, have a better shot at longer, healthier life!
Thank you for your blogs – I so enjoy your writing skills and your distinctive perspective on all things. It is in awe that I view your faithfulness and ability to uniquely express it as related to all things thrown your way. Through your writings, it is apparent that the Lord carries you through all aspects of your life away from home with precious little Allistaire. It is also clear how He soothes your soul while being away from your husband and Solveig. Your life is a testament to your faith in the Lord. I pray for your “limbo” status as you hover between life in Seattle and home in Bozeman. As I check in on Allistaire’s progress, I always fear for her well-being and pray for “things” to be going well. It is with such delight I read of successful days and, for the days not so good, I petition the Lord for Allistaire’s well-being as well as yours. I pray for your strength as you endure this trip through the medical maze. May God’s richest blessings shine on the continuing journey through the maze of everything post-transplant for all of you! My prayers are to the Lord asking him to keep lifting all of you up in the coming days of Allistaire’s recovery! Your witness to the Lord has awakened the spirit within me and I thank you so much for sharing! a Montana grandma
WOW Solveig is 7 years old, I can not believe it has been that long… I am so glad that Allistaire is doing so well. I am also glad that you are able to get a day off once a week, that is so important for you to have some you time. I still Pray for you all on a daily basis and will continue to do so. The photos are awesome 🙂 🙂 🙂
Hugs and Love from Kathy
Holy moly, that little girl has tanked up! I wish I were that cute when sporting a few extra pounds… Thank you for continuing to update with the ebb and flow of the new routines on this side of your time in the hospital. Still praying for you all, hoping you home soon.
Hi Dearest Jai and Allistaire!! I have been on prednisone too many times to count for all my sinus issues and I’m going to pray for that part specifically. It messes with your mind too!! My family knows when to steer clear of crazy Prednisone mom. So I’m praying for as few side effects as possible and unexplainable patience for you Jai. Hugs and love from Montana! In Him, Joan
I just recently found your blog through a friend. Our son just finished 3 1/2 years of treatment for leukemia- ALL.
I saw that you are working on physical activities for Allistaire. Have you thought about Occupational or Physical Therapy? They have amazing therapists at Children’s, who are trained to observe the super-clean requirements of immune suppressed children. And, they make it so the exercise is fun. Anthony LOVED his ladies there. 🙂
Jai, So good to read about progress in many ways, and I hope your Ride went well. Though we have little resources here at Bridge … we have had a recent bounty of donated Laptops. If having one for your use or … just as a game console to occupy a Ron Don captive 3 year old, I would be happy to help get one to you. And if you happen to have Verizon Cell I think they have a new low cost “hotspot” service that can upgrade your “wifi” limitations Via you phone. Likely most other carriers now have this. I would be happy to inquire with our Bridge Verizon rep for you if you are intersted. Blessing Jack Staudt @ Bridge