Journal History
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Thursday, November 20, 2003 12:17 AM CST
Where do I begin? It’s been so long since I updated this page. Thanks to those of you who still drop in, to say hi, and remember Alex. At first I wanted a break, then life got so busy, more time passed, which felt like I needed to do a longer update, and then life got so busy I didn’t know if I was coming or going.
At times the busyness helps. It keeps you so focused on the now, no time for grief. But then I also know I use it as a distraction, and as soon as I get still for more than a minute or two, my grief comes crashing down around me. I want to find a way in my life to be still and to be at peace. Perhaps longing for it is a step to getting there.
Our summer and fall has been good. In July, I attended my nephew’s wedding in Moses Lake, WA. Dennis and John visited his family in Mechanicsburg, PA. It helped all of us to reconnect with our families. John is doing great in school! He is maturing in the classroom—a real helpmate, and his reading has really taken off. He had a fun soccer season, he’s so fast! He scored many a goal. He is so focused when he plays his sports. We had a great family trip to Austin in September for the Austin City Limits Music Festival. The music was fantastic! We also got a chance to visit with Lee (Alex’s sister) and Sam. Since then we have been on the go. Cosmo, our 11-month old standard poodle, finished obedience school. I took him through his set of exercises, and out of 12 dogs, we came in 2nd. I have to admit I was pretty proud of my pup. He has really become a member of our family. Dennis has had to travel quite a bit for work. That’s always difficult on John, he misses him so.
The last couple of weeks life has gotten back to normal—other than we have a cruise over the Thanksgiving week. We leave this Sunday. Last year my parents took all the family on a cruise for their 50th wedding anniversary. Because of Alex we were unable to go. So now it’s our turn. Holidays can be hard, so it will be good to be sailing in the Caribbean. Halloween has passed. It was fun, but hard. Alex, as most kids do, loved Halloween. His favorite costume always involved lots of blood, on clothes, knives, his face. John followed suit this year, with his first torn up, bloody shirt. Halloween and the World Series reminded us of where we were last year. Alex went on the ventilator October 22nd. It was the last time we truly communicated, the last time I heard him speak. It was such an awful two days. It still hurts to think of how it all transpired and the ensuing 6 weeks. If I knew it was the last time we would speak, would I have said anything differently? At the time, I simply let him know what putting him on the ventilator would entail (of course trying to sound positive and in control) and then told him, “You know, no matter what happens, we will always be together.” I’m lucky really. The rest of the family didn’t even have that opportunity. And deep in my heart, even when the tears flow, I know we are still together. As much as I try to stay in a spiritual place in dealing with Alex’s death, as a human being it is so hard to let go of wanting his physical presence. I desperately hold onto memories--the sound of Alex’s voice, the sensation of hugging him, the feel of his long, bony hands--they’ve all grown more distant. Oh to be able just to smell him again or to see him smile!
We have made plans to bury Alex’s cremains. We are going to bury them in a local cemetery on December 22, his birthday, at 2:00 in the afternoon. He died on the 13th, his memorial service was on the 21st, so it seemed like a good day. It also hopefully lets Lee and Robyn attend. We haven’t fully planned the “service”. Hope to keep it small and intimate, with family and a few close friends. We’re still working on a headstone. Most headstones are so traditional and not at all like Alex. We finally found a firm in Memphis, who really works with you in making more customized headstones. We’ve got a design concept in the works now. When it is finalized, perhaps we can post it to the page.
I want to take a minute and thank all of you who continue to support and care about us. I know it is hard to ask us sometimes how we are doing, not knowing what the reaction might be. Please know just the asking helps. There are many of you from MN that I think of frequently (Pam, Rhonda, Mary, Brenda, Deb & Dave, Stacy & Slim, Mike and Beth, Brandon & Jenny, Jen, the Brays, the Timperleys, the DeVolders, and many more). We were a family of sorts for a time—through the worst of times. I apologize for not staying in touch, but know I always carry all that you taught me in my heart.
We are blessed.
Sharon, Dennis and John Wesley
Thursday, June 26, 2003 1:10 PM CDT
June 25th, 2002. A date emblazoned in my mind--Transplant Day. What is there to say? The candle of hope snuffed out. I am so sorry Alex for all you had to go through. But what choice did we have? Perhaps it was the route that needed to be taken for us to say goodbye. I hope you know how much we love you, that we did what we thought was best in a world of imperfect choices, and that during your time with us--"That you had the time of your life!"
We think of you daily, several times daily, and we will carry you in our hearts always. You will always be an inspiration and guiding light for us.
Thank you for blessing us.
Mom, Dennis and John Wesley
Friday, June 13, 2003 3:44 PM CDT
6 Months
I've been putting off doing an entry. I don't know exactly why. But I thought today would be an appropriate day. It is 6 months ago today that Alex died--another Friday the 13th no less. The last couple of weeks have been hard. We were in Minnesota this time last year. There have been so many memories of our preparations to go--getting braces off, end of school, Alex's "going away" party, and our trip up. I remember being filled with such anxiety, fear, much hope, and the sense of adventure. Alex and I had such a good time on our road trip, lots of laughs. I'll always treasure that time. It doesn't really seem to get easier. I miss him as much now if not even more than a few months ago. The chasm of the "foreverness" of his physical absence grows wider and deeper. The hospital memories have resurfaced too, but it is easier to put them in their place. I've had a couple of dreams recently, where Alex was present, but going to die, and should we tell him, and one where there was a procedure that could be done to save him. I actually woke up ok from those, because I could actually see and feel him, and that gave me comfort. I saw a mother and son the other day, Alex's age, and he had his hand on his mother's shoulder, like Alex would do with me. It made me miss, but appreciate Alex's willingness to be so affectionate with me. I had time this last week to go into Alex's room. His things had pretty much been dumped in there. (It was just too difficult after unpacking from Minnesota for me to do more than that.) I was able to start going through his room and just clear out the junk that had assembled over the last few years. I filled up a whole lawn trash bag. I haven't yet gone through his "real" things, and decided what to do with them. That's saved for another day. It's amazing what a child will hold onto. I found little plastic rings, buttons, rocks, feathers, bolts, you name it--the things that make up a little boys life. I believe I found enough pens, pencils and erasers to outfit the family for the next ten years!
John is doing great. We've gotten through soccer, t-ball, and now onto swimming. He is so excited he can now swim with his face in the water. He also got a buzz cut like his brother Alex, and is proud of that. He often asks or compares what he is able to do with what Alex could do at that age. Questions like, am I as skinny as Alex? Was I a bigger baby than Alex? Could Alex go under water when he was 5? Did Alex where goggles? (Yes, with his ears folded over from the band--he said it helped keep the water out. It was quite a funny picture for those of you who remember.)
I don't know always how Dennis is coping. He doesn't talk about it much. I know he talks about feeling the "gap in our family". He seems to be able to put the situation in perspective better than I. His work has been very busy and somewhat stressful. He's so devoted to his work, has a great mind, he amazes me. Hopefully we can give him a good Father's Day on Sunday.
For me, work is going well. My house is a mess. I had a great time in Austin seeing Lee in her one woman show. She was awesome--so funny, so touching. I feel Alex's love every time I see or talk to Lee and Robyn. My grief group has come to an end. As always on this journey, I met some incredible people in the group and hope I can stay in touch with them. That's one thing I am so thankful for. We've gotten such caring support along the way and been introduced to some of the best people that we would otherwise not know. There are truly "angels in our midst". So we continue to thank all of you who have given us your heart, your kindness, your thoughtfulness.
Happy Father's Day to all you Dads who give your children strength, courage, guidance, protection and above all, love.
We are blessed.
Sharon, Dennis and John Wesley
Thursday, May 8, 2003 12:12 AM CDT
An Early Happy Mother’s Day
We are leaving for a weekend getaway to Austin, to see my stepdaughter Lee in her own show. We’ll be camping with her mother, Maryanne. I can’t think of a better way to spend Mother’s Day. Each “holiday” is now a first—without Alex. After my feelings at Easter hitting me by surprise (by being busy I deluded myself that everything was ok—and then BAM!) my grief group helped me to understand that I need to intentionally find a way to make Alex a part of each of these important events. I don’t know exactly how I’ll do that for Mother’s Day, but I will think of something.
I want to take a moment and honor some special mothers I know who have lost a precious child over the last year:
Brenda
Rhonda
Mary
Ruth
Tammy
I honor your unquestionable love.
I honor your intelligence and questioning mind to learn more about medical science than at times medical staff did.
I honor your strength to see your child invaded/in pain and to be their foundation and give them comfort while you were falling apart inside.
I honor your ability to laugh and find humor at the most absurd things and to pass that along.
I honor you for being a “mother bear”, never hesitating to protect your “cub”.
I honor your hope that shines in the darkest hour.
I honor your willingness to let go and trust in God.
I honor you for touching my life, letting me share the life of your exceptional child, and teaching me about the generosity and humility of the human spirit.
I honor all the other mothers who have lost children and whose hearts ache a little on this special day.
I honor my grandmothers, my mother, my sisters, my friends—who’ve each made a difference in the life of a child.
We are blessed.
Sharon
Thursday, April 3, 2003 12:27 AM CST
Over the last two weeks I have been reminded that we are not alone in our grief.
Two friends from Minneapolis have recently passed away. Elma Dueck, an adult woman with FA, while she was able to return home, eventually succumbed to complications from her transplant. Elma and her husband Ken were such an inspiration to us in MN. She was on the adult unit when Alex was first admitted. She was quite far post transplant and was experiencing complications, but they really hung in there and she got better. We were often in clinic together. I cried the day she left for home, because I knew how hard she worked to get there and it gave me such hope (Alex was on the ventilator at the time). Please keep this dear family, Ken, their children, parents, and extended family in your prayers.
We also made good friends with the Flemings, Rhonda and Nathan. We were literally neighbors--both on the BMT unit when Alex was admitted for his GVHD, and at RMH, and geographically of sorts--their from Dallas. Nathan is 16, so he and Alex actually spent some time together. Rhonda was also dear enough to make Alex a blanket, which he used often. Well, Nathan returned home, the same day Dennis and I left to return to Shreveport. But, once again, he ran into complications, was placed on a ventilator, and didn't survive. His funeral is this weekend and I am going to try to attend. Again, please keep this dear family in your prayers.
On Tuesday night I attended a grief support class for parents who had lost children. We are not alone!!!! There is such power and comfort in being able to tell your story, without feeling like you have to edit it, put a spin on it, or that you are being watched to see if you're okay. I want this experience to be a positive force in my life. It's such an opportunity for me to learn from, but I know in order to learn I have to let myself understand and "see" the darker side of my grief. Going through this with other mothers and fathers will help to point the way.
Alex's memories and presence are with me daily. Sometimes it is painful, sometimes joyous. We have an intercom back to Alex's room. The other day I just knew if I pressed the button and called back there I was going to hear his voice. That intercom provides such wonderful memories. I guess because you weren't talking face to face, it allowed you to be sillier than you may have been otherwise, or send little "i love you's" even when homework was being done.
Our life is full and busy. Spring has arrived along with its whirl of activities. John is finishing up soccer and beginning t-ball. Spring Break has passed. His birthday is on the 8th, party on the 13th. And then Easter, and before you know it school will be out. He is a pure joy to be with. Cosmo, my toddler poodle, also is keeping us busy. He now weighs 29.5 lbs. Soon he'll be bigger than John. Obedience school starts next week.
We continue to feel blessed by Alex, our lives, and the friends and family that continue to support us and hold us up.
Sharon, Dennis and John Wesley
Sunday, March 16, 2003 8:11 PM CST
Dear Friends,
It has been awhile since our last entry. Things are going well with the family. Time removes the immediacy of our loss, but not the hard reality. We are reminded daily of Alex's life, both the past and present. We miss him sorely.
This week marked the third month since his earthly death, and it was made very memorable by the Shreveport Little League. The annual spring invitational tournament has been named after Alex. Family members gathered at the pitcher's mound early Thursday evening. Over a dozen uniformed teams surrounded the infield, with the President of the Association speaking about Alex and his passion for playing baseball. Sharon followed, sharing how important being part of a team was to Alex, followed by the national anthem. All the boys held their hats over their heart facing center field. John Wesley, in a mild state of shock from the entire spectacle, then through out the first pitch...over the head of the catcher! Needless to say, it was quite moving, and I was thankful that I could participate in silence.
That same morning, Teddy Allen, a local Shreveport Times columnist, wrote a very personal tribute to Alex in his column. I share it here with you as an eloquent reminder of how Alex touched this world in his all too brief, whirlwind encounter with it:
"For A Diamond Who Sparkled On A Spring's Field Of Green"
Posted on March 13, 2003
"Alex Eddy, 14, played his final game of baseball last Spring.
He didn't want to go to the hospital for the bone marrow transplant until after the season, and his family didn't make him. You don't leave the guys until the battle is done or until they drag you limp and spent off the field, not if you're a teammate, you don't.
Alex Eddy was as good a teammate as you could hope to find. I wish you could have seen it because it sounds cliche but Alex Eddy was always clapping, always encouraging, always hustling. I write "always" because it's true. I saw it game after game. His friends say he brought the same passion to his schoolwork, his hobbies, his family.
Anyway, Alex Eddy wasn't leaving either the ballpark or the Red Sox.
The league's defending champs, the Red Sox finished third last spring. Alex played about half the time, much more in the stretch run.
He was extremely fast, was Alex Eddy. He was lanky because of the Fanconi anemia, a recessive disorder that leads to bone marrow failure, but his long legs carried his light frame from here to there lightning quick and if you want to throw him out after a bunt you can't waste time getting it done.
Though a thin target, he dug in and got hit by more pitched balls than any player in the league, two years running. Truly, it was one of the most logic-defying scenarios I have ever witnessed. Alex Eddy was drawn to baseball; apparently, the attraction was mutual.
The last time we played the Sox, we hit him - twice. Of course he scored both times and of course on that day if he'd have come to bat a dozen more times we'd have hit him a dozen more times and he'd have scored a dozen more times.
Shaking hands after the game I told him quickly, passing down the line of hand-slapping players, "Hey Alex, sorry we plunked you man," and he said, "That's OK; it happens all the time."
The season ended and in June Alex Eddy checked into the hospital in Minneapolis. A scheduled four-month stay turned into six. "Complications," a word that enters a 14-year-old's life for reasons only God knows.
Almost every day during his hospital stay, his family posted Alex Eddy's journey at http://caringbridge.org/la/alexeddy. On Dec. 14, Alex's mom typed these words. They concerned events from the day before, a week before his 15th birthday.
"Alex is now resting comfortably," she wrote, "in the arms of the Divine."
Three months ago today.
A few weeks ago one of Alex's coaches suggested naming Shreveport Little League's preseason tournament in his honor. Last weekend, another of his coaches drilled a plaque into a corner of the bench in the home team dugout: "This seat reserved for Alex Eddy, #51."
Last night, for the first time in two years, the Red Sox played without Alex Eddy, in the first round of The Alex Eddy Invitational.
Spectacular play often earns an athlete the tag "a man among boys." That's good. And lots of fun to watch.
In Alex Eddy, we had a ballplayer who stood out for another reason, less dynamic but more eternal. Alex Eddy was a boy among boys and, in turn, a boy among men. The genuine article. Alex Eddy was a boy who appreciated every second he had that jersey on his back, a boy who was always in the moment, always watching, always trying, forever running fast and free for the love of the game. "
May God continue blessing us all,
Dennis.
Wednesday, February 12, 2003 8:21 PM CST
I know it has been a while since I've written. I've been busy trying to get a few things done before starting back to work on Monday. Work has been good. It has given me something to focus on outside myself, a distraction, a challenge, a moving forward.
I had a dream last night. We were still in the hospital and Alex was in his "slumber state". And then, to everyone's surprise, he awoke, was "alive", and feeling better. I took it as a reminder to me that Alex has indeed been "reborn" into a new life. Silly me, I immediately reminded Alex that he should wash his hands and wear his mask. I guess you can't stop those mothering instincts whether asleep or awake.
Last week we found a cemetery plot to bury Alex's cremains. I think he would like it, the plot is in the sun but between two live oaks. I don't know when we'll bury the cremains, maybe on the one-year anniversary and make it a memorial celebration.
As many of you know, one of the two organizations we asked donations to be made to when Alex passed away was the Shreveport Little League. They have recently initiated a preseason tournament and have named it the Alex Eddy Invitational. This will be an annual event! I feel so honored for him to be remembered in that way. I'm sure Alex is blown away by that. One of his coaches is also going to put a small plaque at the end of the bench in one of the dugouts that says, "This seat reserved for Alex Eddy, #51". So, so meaningful. John will be starting T-ball out there this spring. Being at the fields will bring back such good memories.
I have asked some family and friends to write down memories of Alex. I pass along those of my dad, Ray. I'm sure he would not mind me sharing those with you. I'll post more in the future.
Thanks for reading. Thanks for being there for us.
We are blessed.
Sharon, Dennis and John
MY REMEMBRANCES OF ALEX;
Seeing the day he was born. So cute and tiny.
Wondering what all that humming and head-and-body rocking were all about as he was growing up.
Concerned about his "different" eating habits when he was young. What a diet! I thought he'd never get any meat on his bones, come to think of it, he never did fully climb that mountain.
Playing Monopoly according to Alex. He must have believed in Predestination, because it was predetermined that he was definitely going to win!
Showing him how to throw the two-seam and four-seam curveball---overhand, three-quarter and sidearm.
Just playing catch with him in the yard or out in the street with him and his neighborhood buddies.
Playing Ping-Pong with him at Uncle Steven's.
Playing all the other things together at the various family gatherings (sidelawn softball and touch football, basketball, water volleyball, poker, and gin rummy, to name a few). And, I think Alex especially enjoyed playing shuffleboard at Grandma's and Gramps.
Alex got a big kick out of me acting like I was really afraid in Shreveport when I had some blood withdrawn from my arm for a Fanconi Anemia research project.
He got me real good (colloquial for "really well") when he, Grandma, and everyone else conspired to make me think that perhaps Grandma had mistakenly used some frozen mice (for Alex's pet sidewinder snake) from the refrigerator freezer in her chicken casserole. Not that I'm that gullible but, after 50 years with Grandma, what was I supposed to think?
Discussing the pros and cons of those da__ed New York Yankees!
Watching him fish, which he dearly loved to do.
Playing gin rummy with Alex in his hospital room in Minneapolis soon after the bone marrow transplant.
Saying farewell on December l3th to a courageous and dearly loved young grandson who was taken from us much too soon. When he left, I felt his touch and imagined he might say: "It's OK, Gramps! Don't take it so hard. I'll be fine. We'll be getting together down the road".
That was Alex, my beloved grandson, who I will always think of fondly and never forget.
Gramps
Wednesday, January 29, 2003 at 02:16 PM (CST)
We recently received the results of Alex's autopsy. We had agreed for one to be performed because the doctor's were never clear about why Alex deteriorated at the end, and hoped that by gaining answers it would be helpful to other children undergoing transplant. Well, as was often the case with Alex, there are still no clear answers as to the primary cause of death. The autopsy stated that the cause of death was organized diffuse alveolar damage in the lungs, which basically means that the air sacs of his lungs had scarred down. However, they were unable to determine the underlying cause of this side effect. The autopsy revealed that at the time of his death no viral or fungal organisms were identified, there was no GVHD found in the lungs, gut or liver, and while not excluded, the damage to the lungs did not appear to be a result of the chemo/radiation regimen. In discussing these findings with Dr. MacMillan, she indicated that their “best guess” is that it was a side effect of a previous infection, which had been treated and cleared. While this is in some ways frustrating to not know exactly why what happened to Alex happened, I took comfort in knowing there was nothing that the doctors or I overlooked or should have been aware of. In other words, all that could have been done for him was done. I was encouraged by Dr. MacMillan who indicated that it is patients like Alex which really motivate her to pursue her research, particularly in the area of immunology, trying to develop better methods to determine a patients immunology status both prior to and following transplant. So perhaps some additional good will come of Alex’s death.
On the home front, we strive to move forward through each day the best we can. I will be returning to work in a week or so. The distraction and challenge of work will do me good. John will soon be starting soccer, which will be followed by T-Ball. I am so looking forward to being back out at the ball fields. I know Alex will be joining us out there too. We are also getting more and more excited about our puppy. We should be bringing him home in about 3 weeks. I find it so interesting that the one puppy (a standard poodle) we found was born on Christmas Day and is a male pup—but not the dominant pup of the litter. So it looks like we’ll be a household of 3 males once again. I do believe God works in mysterious ways. We’ve finally selected a name for our puppy—Tully. This was one of the names John came up with and that we all liked.
My next big task is to try and find a place for Alex’s ashes. I’ll try to tackle that next week. I have put off trying to go through his things. I’m just not ready yet. Unpacking the boxes from Minnesota was hard enough. My brother, Warren, advised that there is no hurry or timetable I need to meet on that and that it may not be any easier later. Warren lost his wife Jill last spring and has been helpful to me in understanding my grieving process. I take comfort in knowing that Jill is there to help “mother” Alex.
I want to thank all of you for continuing to reach out to us. Your love and support is heartwarming. There are still many of our friends in Minnesota struggling to heal and recover, as well as those who’ve returned home. When so many are fighting just to be here with their loved ones, it gives me pause as we as a nation stand on the precipice of war and the risks our men and women in the armed forces will face. I love you Jessie.
We continue to be blessed.
Sharon, Dennis and John
Monday, January 20, 2003 at 09:19 PM (CST)
Below is an article I wrote for the Fanconi Anemia Family Newsletter, so I thought it would be good to go ahead and share it on Alex's web page too.
In Memory of Alex Eddy
Woo Hoo!! That was the send off we gave Alex on the day he departed this world. It was one of Alex’s favorite expressions (being the die hard Simpson’s fan that he was). Saying goodbye to Alex was hard, yet joyous. He is now free of a body that limited him, free of invasive tubes, free of pain—He can now be more “real” than any of us can imagine and only hope for.
Alex was always a unique child from the day he was born, December 22, 1987. The 22nd, the day after the Winter Solstice, is the day light begins returning to the earth. So, I called him my “Child of the Light”, and it was true, he always carried a light within. Adults in particular were drawn to Alex and his inner “light”. Alex was quiet and gentle in nature, caring and affectionate. In life, everything Alex undertook he did with a passion. Whether he was the best or even good at what he did was not as important as experiencing the “activity” to the fullest. He loved many things—baseball, fishing, nature, playing card games—Pokeman and Magic the Gathering, collecting anything and everything, playing the tenor sax, and doing anything that allowed him to be part of a group—whether it was being on a team, cub scouts, or attending a family gathering. Alex was a disciplined student who excelled in at school, but hated busywork. He had dreams of one day attending a college like Harvard.
On the Fanconi Anemia front, Alex was not diagnosed until he was 6 years old. He had always been extremely thin as a child, had some café au lait spots, and slightly “different” looking thumbs, but no other physical anomalies. It was a blood test taken when he had the flu that led to his diagnosis. As all of you know, from that day forward our world came crashing down around us, but over time we learned to live with the disease. In fact, while on the oxymethalone our life was almost “normal”. The disease was more of a nuisance, with only the hints of its life threatening qualities lurking in the background. In October 2001, we traveled to Minneapolis and Fairview University Medical Center (FUMC), met with Dr. MacMillan, and had Alex’s annual bone marrow biopsy taken. The biopsy results showed there were very few cells left in Alex’s bone marrow and as a result his oxymethalone would not be effective much longer. It was recommended that we proceed to transplant given the success rate of the latest protocol and since a matching unrelated donor had already been identified. After much research and soul searching, we determined that the transplant was Alex’s best chance for securing a longer life. We scheduled his bone marrow transplant for June 2002; allowing Alex to finish the 8th grade, get his braces off, and most importantly to him, to finish his last season of baseball.
We drove from Shreveport, Louisiana and arrived in Minneapolis on June 8; the transplant date was June 25. While it was tough, Alex did quite well through transplant—discharged on day +25 post transplant. But that’s where Alex’s luck ran out. Alex was admitted to the hospital 7 more times in the following months for repeated fevers, Grade 2 GVHD, changes to his medications, and finally for the adenovirus. During our last admission Alex suffered seizures, followed by a loss of ability to oxygenate, which required him to then be put on a ventilator. Added to this was kidney failure requiring peritoneal dialysis. Six long weeks later, with his lungs having further deteriorated, Alex was removed from ventilator support and quietly passed away December 13, just 9 days short of his 15th birthday. What I know is that the doctors and nurses at FUMC all fought hard for Alex, as did we, but in the end we were doing more to him then for him, and so we set him free.
We are so grateful to Alex for the time he blessed our life and the things he taught us. He’s the one who showed us how this disease did not define who he was. He approached it with a Zen like attitude—never giving in to it, yet never fighting it. He taught us how to be present to the moment, something he practiced daily. During transplant he even mentioned that he never worried about what tomorrow would be like, that he couldn’t do anything about it anyway, so he might as well just stay focused on today. Alex was happy and good-natured and laughed easily, especially when watching inane movies (Dumb and Dumber, In Search of the Holy Grail, anyone?). He was loyal and loving with a strong sense of right and wrong, particularly when it came to how you treat others—he often became indignant at both friends and adults for their behavior. He never tried to be popular, almost shunning that, wanting to be stubbornly true to who he was.
I have no regrets about our choice to go to transplant or the care we received at FUMC. Anyone facing a similar decision should feel confident they would be in the best of hands. During my stay, I saw many FA children (and even one adult) go through transplant and return home. I maintained a web page as we went through this experience, which was extremely therapeutic. More importantly it opened us to an extended community of family and friends, both old and new (which included many of you) who joined us and supported us on this journey. This community transformed this very difficult experience into one of beauty and love; into one of many gifts, not just of loss; into a future of hope, rather than despair. For that I humbly thank you.
Sharon Swanson
Friday, January 10, 2003 at 10:00 AM (CST)
It's Been One Month
It is hard to believe that it has been a month since our dear Alex passed away--or should I say since he was reborn. At times it feels like another life ago, at times like just yesterday.
This week has been particularly hard. First, John started back to school. So just the act of taking him to and from school is a reminder that Alex will not be coming home at the end of what would have been his school day. So this week I have spent mourning the hopes we parents place on our child's future—what would high school have been like for Alex, what friends would he have made, what classes would he have excelled in and how would they have shaped what he would have done with his life, also things like getting his driver's license, going to parties, moaning about teachers, etc. I know rationally that his future is much better now, filled with learning on a higher scale (Alex always did like shortcuts—he hated busywork), but as a parent it is hard to let go of your dreams for your child. I've also been slowly opening boxes we packed from Minnesota. Each box contains memories, so I do just a little at a time. Earlier in the week, I was cleaning out my purse and found a newspaper ad that Alex had cut out for me in MN to save for when he felt better. It was an ad for a local store that carried fudge. Alex knew the day he wanted to eat fudge again would be the day he was indeed well. Finding it of course brought tears. Lee told me that when she comes upon these things she calls them "Alex kisses", so I'm trying to do the same. They're lots of "Alex kisses" in this house, so I guess you would say we're surrounded by his love.
I'm still trying to do symbolic things to help me cope. My act this week was to leave a hunk of hair when I got it cut Tuesday (for those who don't know me, I wear my hair quite short). For five years of his life—Alex, who also always kept his hair short, in a buzz cut—wore a small braid in the back. So I'm going to do the same for a while, but off to the side. John thought it was a pretty cool idea because it's just like Anakin from Star Wars, not exactly the effect I was after.
Dennis and John are never ones to sit around and mope. They have taken action to bring activity and something new to love into our household. John and Dennis have wanted a dog for years and decided that now would be the time to get one. So come mid to late February a cream/apricot colored standard poodle puppy will be welcomed into our home. We're busy learning about poodles, training, and picking out names. Not being a dog person I'm a little intimidated, but I know that this is a good step to move our family forward. What do you think Alex?
Well, I'm off to Dallas for the weekend, to visit my good friend Cherrie. Right now I need my friends, to talk to, to sit with, to cry with, and to laugh with. As I go, I am ever mindful of all my friends from MN, some who have thankfully left and gone home and some who are still there struggling through their child's recovery. I was quite sad to learn this week, that Erica, a 17-year-old girl with FA passed away this week. Keep her parents, Brenda and Tom, and her grandmother, Betty, in your prayers, as this is their second daughter they've lost from FA. I know it may sound weird, but just learning of this has been helpful to me to know that I am by no means alone in my grief of losing a child, and that I need to get on with celebrating the life that is right in front of me.
As always, thanks for listening.
We are blessed.
Sharon, Dennis, John (and Alex)
Saturday, January 04, 2003 at 10:11 PM (CST)
The Planting of the Tree
Life goes on. Today we planted a tree for Alex in our backyard, a dogwood. This is a tree that was used as part of the plantings at Alex's Memorial Service. There was one for Gene's home and one for ours. Dennis, John and I each helped in its planting. Dennis and I each picked out readings, and we asked Alex to stay rooted with us and to continue to grow with us as a family. We even asked him to have a few laughs with us when we swam in the pool. John commented that when he grew up, he wanted a tree just like Alex. He always did want to be just like his big brother, which more often than not drove Alex crazy.
I'm trying to reach out and talk with more and more friends. It seems to be helping me, to not be as afraid of the memories. In fact today I met Maryanne, Lee and Robyn's mother, at George's Grill for breakfast. I went there specifically because it was a place we frequented when Alex was young. He would order the grilled cheese and bacon sandwich, but with the bacon on the side. How he loved bacon. He would then proceed to "pick" the cheese out of the grilled cheese sandwich. As many of you know, Alex had the strangest eating habits when he was little. It seems Alex's memory is everywhere we turn. John and I were playing soccer in the driveway the other day, and he looked at some markings in the pavement, and (knowingly) asked what they were. I responded that they were wheel marks from Alex's scooter. John immediately said how he wished he could see Alex riding his scooter again. I picked up some film yesterday that I had not gotten developed since Alex's first admission for transplant up until he was on the ventilator. It made it all so real again, painful, but real. I'm glad I have the pictures. I don't want to forget this time--what it meant to me and my family and the things we learned about ourselves, others and life in general.
Well our life will soon be resuming its normal patterns. Dennis started back to work on Thursday. John returns to school on Monday. I have a number of things still to take care of, which will hopefully include making contact with many of you.
To end this entry I want to share with you a reading used by the hospital chaplain when Alex had his transplant and when we said goodbye to him around his bed. We also used it at his Memorial Service and has become a favorite of mine.
A Story from the Sufi Tradition
A stream was working itself across the country, experiencing little difficulty. It ran around the rocks and through the mountains. Then it arrived at a desert. Just as it had crossed over every other barrier, the stream tried to cross this one, but it found that as fast as it ran into the sand, its water disappeared. After many attempts it became very discouraged. It appeared there was no way it could continue the journey.
Then a voice came in the wind. "If you stay the way you are you cannot cross the sands, you cannot become more than a quagmire. To go further, you will have to lose yourself as you know yourself to be now."
"But, if I lose myself," the stream cried, "I will never know what I am supposed to be."
"O, on the contrary," said the voice, "If you lose yourself, in this manner, you will become more than you ever dreamed you could be."
So, the stream surrendered to the bright-burning sun. And the clouds into which it was formed were carried by the powerful wind for many miles. Once it crossed the desert, the stream poured down from the skies, fresh and clean...and full of the life-giving energy that comes from storms.
We are blessed.
Sharon, Dennis, John--and Alex
Tuesday, December 31, 2002 at 01:26 PM (CST)
Happy New Year!
The last two weeks have been so emotionally intense. Filled with fond remembrances, laughter, tears, love and gratitude. There has been a lot of living—packing and leaving Minneapolis, making funeral arrangements, planning Alex’s memorial service, hosting family, celebrating Alex’s birthday, relearning my home, celebrating Christmas, taking on the role of Mother again to John, and endless paperwork.
We were so lucky that family and friends arrived and helped us out. It truly allowed us to spend the time we needed and wanted on Alex’s service, which proved to be extremely healing and meaningful. I can’t tell you how touching it was to see so many take the time to attend either the visitation or Alex’s Celebration of Life. It truly made us feel like Alex, and we, were cared for by many and that somehow, perhaps his life and his struggle did make a difference. So to all of you who attended and gave your condolences, to those who called or sent cards, to those who sent emails or entries to the guestbook, to those who sent food or flowers, you have made a difference in helping us to cope through this difficult time.
Alex’s service was special. For his casket, a good friend prepared an arrangement of things reflecting Alex’s love of nature—a rabbit fur of his, a turtle shell, some sea shells, and feathers he had collected during his life. Added to that were greenery items from our yards, even grass from the baseball field—all very meaningful. Music before, during, and after the service included songs he liked, as well as a few that were important to the family. The most enjoyable part was hearing from people in attendance special memories of Alex, particularly those of his sisters, Lee and Robyn, and those of his friends. Many also filled out “remembrance cards”, sharing with us special moments and occurrences we would otherwise not know about. I’m thinking of preparing for the family a “Memory Book”. A place where we can collectively record specific instances in Alex’s life that give a glimpse into the person he was. I invite any of you who read this and knew Alex to please enter your remembrance to the guestbook. Perhaps this would be one way for Alex to live on in the minds and hearts of John, Lee and Robyn.
We here are experiencing all the emotions that come from grieving for a loved one. And when it does John and I say—“Oh my, here comes another wave!” There are times when the images of the last 6 months in the hospital haunt me, especially the times right before Alex was intubated and the weeks on the ventilator. These are hard to erase. There are times when Dennis and I have doubts about the choice to go to transplant. There are times I even miss my life in Minneapolis. There are times I am so angry that the disease Fanconi Anemia took my boy from me. And there are times I simply miss Alex, when I want to go back to his bedroom and see him sitting on the edge of his bed.
But that is not to be. And so I struggle to find peace in knowing that Alex has been reborn into a new life, without pain, surrounded by love—to embrace the gift he’s been to our lives, and to know how fortunate I am to be his mother and how lucky I was to spend every day of the last 6 months with him.
And so it is the New Year. This journey has taught me how easily we can become connected to each other simply by sharing our hopes, our prayers, and ourselves. My hope for the New Year is that we hold onto this “connectedness”—and that the circle continues to grow. And in Alex style, it never hurts to greet it with a big bang! Fireworks anyone?
We are blessed.
Sharon, Dennis & John
Tuesday, December 17, 2002 at 09:46 AM (CST)
We returned to Shreveport on Sunday with our luggage and personal baggage, tired and saddened from the loss of our dear Alex. It will take some time for us to process all of this, and as noted in the revised introduction to Alex’s web page, we intend to continue our communications for awhile until we have finished sharing what we feel is important about Alex’s story. So please click by every now and then to see what’s up. We’ll try not to be too maudlin.
We have planned the following services for family and friends at Alex’s church:
Visitation
Friday, December 20th from 6-8 PM
All Souls Unitarian Church
9449 Ellerbe Road, Shreveport, LA
A Celebration of the Life of Alex Eddy
Saturday, December 21st at 10 AM
All Souls Unitarian Church
9449 Ellerbe Road, Shreveport, LA
December 21st, the winter solstice, is a fitting day to celebrate Alex’s life and bless him on his continuing journey, since our “child of the light” was born on December 22nd, the first day each year when the darkness begins to wane and the light returns to our part of the world.
If you would like a tangible way to honor and remember Alex’s courageous and passionate spirit, you might consider a contribution in his name to one of the following non-profit organizations:
Fanconi Anemia Research Fund (FARF)
1801 Willamette Street, Ste. 200
Eugene, OR 97401
Shreveport Little League Baseball
2459 E. 70th Street
Shreveport, LA 71105
FARF annually awards grants to medical researchers around the world who are trying to wrestle Fanconi Anemia to the ground. One day there will be a cure, and with your help it will come sooner.
We have spoken often of Alex’s love of baseball. He never seemed happier or more alive than when he was on the field and with his teammates. What Alex lacked in ability he more than made up for in spirit. As a matter of fact, at Alex’s request, we timed his transplant to coincide with the end of his Little League baseball season.
Thank you Alex, for making our life brighter, and teaching us many things. We miss you already, and love you very much.
Dennis
Saturday, December 14, 2002 at 10:40 AM (CST)
Alex is now resting comfortably in the loving arms of the Divine. He left this tangible world at 5:40pm yesterday. He was surrounded by a circle of love—Me, Dennis, and John, Gene and Lynn, Lee and Robyn, Maryanne, Grandma Gail and Grandpa Ray, and Aunt Ann. As one nurse commented, if Alex could have been lifted by the power of love, he would be with us now. All that could be done for him was done. It was simply time to stop. Alex died peacefully. His body no longer limits him. He’s free now to continue on his journey—he still has “life work” to accomplish, just on a different plane.
Alex was such a blessing in our lives. While his life was short lived, it was well lived. Full of goodness and innocence and daily presence. He has been a teacher to us all.
We sent Alex off with prayer, blessings, and in song. And at the final moment gave him one last WOO HOO!!
In all our sadness, there resides joy. So many of you have participated in our journey, and we have met so many exceptional people along the way—families at RMH, nurses, doctors, social workers, physical and respiratory therapists, care partners—people who became in many ways our family during our stay and will forever remain our friends. To all of you, thanks for joining us and giving us your prayers and love and support. They continue to buoy us during this difficult time.
We plan to return to Shreveport tomorrow. Tentative plans include a Visitation on Friday evening and a Memorial Service on Saturday morning. We will keep all of you updated. Neither Alex, nor I has written the last word. There is still much to share.
We are Blessed.
Sharon and Alex
Wednesday, December 11, 2002 at 09:31 AM (CST)
Day +169: It’s Time for the Rally Caps
So far Alex has shown no real signs of improvement. In fact, he’s gotten worse. He is requiring more and more oxygen in order to keep his saturation levels up. The doctors think his lungs are getting stiffer. As a result he’s leaking air between the lung and skin, what they call crepitis or subcutaneous emphysema. We’re back on full-time dialysis because his weight keeps going up. This morning he’s running fever. Family members—Dennis and John, Gene and Lynn, Lee and Robyn are trying to get up here as soon as they can. We don’t think Alex has much longer. The doctor’s are still trying to figure out if there is anything they can do, but I believe they feel they’ve tried what they know how to do. Everyone is committed to making sure that he is comfortable.
Alex was a true lover of baseball. It’s the 9th inning and we’re losing. It’s time to put on our rallying caps. You know the Yankees were notorious for pulling out a win at the last up at bat. I've got mine on--Alex's oldest and most favorite Yankees cap.
Please know that I feel all the support, concern and prayers out there for Alex from those of you we know and from even those of you we don’t know, but have somehow joined us on this journey. Thank You.
We continue to be Blessed.
Sharon and Alex
Monday, December 09, 2002 at 10:38 PM (CST)
Day +167: Holding Tight
Not much has changed for Alex. He receives his last dose of the high dose steroids tomorrow. Yesterday they placed the surfactant in Alex’s right lung, today in his left lung. It is still too early to know if the treatment has halted his inflammation. They will probably do a follow-up CT Scan in a couple of days. I did not meet with the ENT doctors today regarding the “trach”. Tomorrow I’ll see if we can make a meeting a priority. If this is determined to be a safe option for him, we need to go ahead and do it. It is hard to continue to watch him with these tubes in his mouth, and the discomfort they cause, and to see him so drugged. I miss Alex’s spirit.
I am still encouraged by the efforts the doctor’s are taking to determine how best to precede with Alex. They are concerned and doing everything they know how to do. I’m hoping they will buy Alex enough time for a miracle to happen. I feel blessed that we have such skilled and caring medical professionals on our side.
I’m going to make this quick. I’m a little tired this evening. Please keep the prayers coming.
We are blessed.
Sharon and Alex
Sunday, December 08, 2002 at 09:44 AM (CST)
Day +166: Trying to Find a Cure
The last two days have been better for Alex in terms of pain management. Alex was switched from Fetanyl to Morphine, because they believed he had become too tolerant of the Fetanyl and therefore it was not providing the desired pain relief. It has been good to see him rest peacefully over the last two days. The side benefit is that it has allowed me to rest more peacefully too.
Alex’s key issue is still his lungs. I wish I could report that they are getting better, but they are not. In fact, the doctors’ admitted to me on Thursday that they were “clueless” as to why his lungs were worse and ordered one last diagnostic test, a chest CT Scan. I saw the CT Scans this morning in comparison to ones taken at the end of October. There is definitely lung degradation. The doctor’s describe it as appearing similar to a disease process called bronchiolitis obliterans. I need to try to research that term some more, but they have described it as being an inflammatory type process, however they still don’t know what has triggered it, apparently there can be multiple causes from viral to GVHD. The doctors also indicated that at many institutions, once on a vent under these circumstances, they are at the end of what they can do medically. The ICU doctor said Fairview was different in that they still look for a cure. The plan now is to put Alex on high dose steroids—I mean HIGH dose steroids, 500 mg of methylpredinisone twice a day. We started last night and they will be given for 3 days, and then Alex will return to his current level of steroids, 30 mg twice a day. This high of a dose has side effects and risks. The primary side effects are feeling “crappy” (sort of an internal rage), high glucose levels and high blood pressure. We have already had to start an insulin drip. The biggest risk is that the steroids suppress the immune system and thus put him at risk for infection. Today, they will also be inserting into his lungs surfactant, an enzyme/protein that naturally occurs in the lung and cushions the lungs when they expand and deflate—sort of like the viscous on a soap bubble that creates the surface tension to maintain the bubble. They have used it quite successfully on premature babies with insufficient lung development. This will be the first time they’ve used it on a BMT patient, but because it naturally occurs in the body they do not believe there is much harm in trying it. The ICU doctor had done some research that indicated that surfactant can be affected by transplant or the preparatory regimen used. Send lots of prayers our way that this plan works, even as we speak Alex is needing more and more support form the ventilator.
The other major step we may be taking in the next week, since the chances are greater that Alex will be on the ventilator awhile (the ICU doc estimated 2 months), would be to perform a tracheotomy. This could have multiple benefits for Alex and just would greatly enhance his quality of life. Once the trach heals, they could begin weaning Alex from his sedation. To do so would allow him to once again participate in his own life. He would then be able to sit up in bed and who knows even watch TV, or whisper, "I Love You" to his Mom. I’ll keep you posted on when or if this occurs. I think it will be a good interim step that will allow Alex to build up some of his strength while his lungs heal. From what I can tell there are no greater risks to this procedure than what the Endotracheal Tube now presents.
We see miracles happen here all the time. We’re waiting for ours!
We are Blessed.
Sharon and Alex
Thursday, December 05, 2002 at 10:38 AM (CST)
(This is my entry from last night. The site was down so I couldn't post it.)
Day +163: Back in the Saddle
Today we’ve gotten our first “real” or significant snowfall here in Minneapolis. It’s not deep enough to build snowpeople yet—those days are a coming though. John would have loved to see this. I can’t wait for him to be back up here at Christmas time and watch him have his first true snow experience.
I had a great time away from the hospital environment and enjoying lots of one on one time with Dennis and John. Our trip to Brainerd was COLD, but we found plenty to do (movie, shopping, horse drawn wagon rides, eating, jaccuzziing, etc.). Most memorable was watching the lake our room overlooked freeze over while we were there, and hiking with John and watching him learn about tracking deer (scat piles, tracks, and beds). I want to thank Gene and Lynn for coming up and letting me have some family time, rest and relaxation.
Re-entry has been more of an adjustment than I was prepared for. Alex has been in a bit of pain since I’ve gotten back and I’ll have to say I must have gotten a little soft while away (or back to normal?) and was easily upset at first. I’m now beginning to toughen up again. Alex has had various symptoms of significant pain off and on for the last few days—and according to Gene, in days previous to those too. Everyone is working hard to figure out what is causing it. It appears to be gastrointestinal, or bladder, or both. The problem is often they are chasing the pain and haven’t been able to prevent it. And of course, Alex gets frustrated that he can’t communicate what the problem is. On top of that, when one of these bouts appears, he starts breathing way too fast (60-70 bpm) and too shallow, which results in his oxygen levels falling. A gram positive staff type infection was cultured from the bronchoscopy, but nothing else—none of the various ammonias, no fungus, no CMV, which is good. The infection was covered by a dose of Vancomycin. The goal now is to keep him stable, well supported on the vent and once again to increase his nutrition. The doctors feel we are probably looking at Alex remaining on the vent for “awhile”, that it will take some time for his lungs to heal and for him to get strong enough. My hope for Alex during this time we can keep him free of any major infection and keep him comfortable.
Other good news—Alex is still CMV negative and so today received his last dose of the Foscarnet. This should help take some of the stress off his kidneys too. From all appearances his GVHD seems to be under control also. Alex’s dialysis is going well, his kidneys are recovering. From a kidney standpoint he could probably use less dialysis, but the doctors want to make sure they keep Alex very dry (so no fluid collects in his lungs) and so they can make room for as much nutrition as possible.
Alex has a tough road ahead still. Keep him in your prayers. Also say prayers for a young girl, Morgan, who will be undergoing some procedures tomorrow and her prognosis does not look good. Her family has been here a long time now, and we’re all holding onto hope that one way or another tomorrow will be a good day for Morgan.
We are blessed.
Sharon and Alex
Tuesday, December 03, 2002 at 07:15 PM (CST)
It's Gene again.
This is my last entry for a while. I will be leaving tomorrow. Sharon, Dennis, and John came back Sunday after a week of R & R in north Minnesota.
Alex had a bronchoscopy yesterday evening, after doctors decided they needed to know more about the condition of his lungs. While his lungs weren't getting worse, they weren't getting better. As of today, some results are in, but results from the cultures taken aren't known yet. Good news is that there is no observable damage to lung tissue from his last round of lung problems. There may be some signs of infection, and they are giving him antibiotics in case it is, but nothing has been confirmed yet.
This is getting to be a familiar routine - we want definite conclusions from the facts that are present, but docs want more facts before they will actually confirm something - it usually comes out in a statement like - "welllll - it resembles an infection; it has most of the earmarks of an infection; we're going to treat it as an infection" --- I guess it goes with the territory.
An update on the SporTran blood drive: the bloodmobile had two separate sessions at SporTran yesterday to catch both shifts, and there were lines waiting. Separate times at both downtown city hall and the annex are scheduled as well. Some folks are giving for the first time.
I'm not above bragging a little bit about the drive to people I see day in and out here. And I get great feedback from staff here at the hospital, as well as parents of other patients on the children's Bone Marrow Transplant wing. They tell me how great it is to see this kind of response from folks at home. All the kids on this floor get lots of transfusions, just as Alex does, and it means a lot to see people turn out to donate their blood.
Good Job, Everybody.
Thanks.
Gene and Alex
Friday, November 29, 2002 at 09:12 PM (CST)
Day After Thanksgiving
It's Gene again.
Hopefully only a couple more holidays here, and then Alex can spend them at home. President's Day in Shreveport would be nice.
For the past two days the main aim has been to keep Alex comfortable and resting to let his lungs heal and get stronger. No change in the x rays, doctors say, and although the lungs aren't getting worse, they're not getting better, at this point. They are talking about another bronchoscopy if no more improvement over the next few days.
Alex's temperatures have come down to normal, and dialysis/ kidneys continue to look good. Word came up yesterday that Alex was officially clear of the adenovirus he was dignosed with over a month ago. Now hospital staff don't have to gown and glove every time they come into the room, to keep from spreading it. It's also good to know that his system was able to eventually eliminate this virus.
But the latest challenge has been abdominal pain for the last two days, and again, doctors are not sure of the source. Sonograms were taken, but nothing abnormal showed up. Finding the cause of pain is hard, since Alex can't talk, and is sedated so he cant move enough to clearly show where it hurts. Alex is getting a variety of treatments to see if one of them helps the pain. Meanwhile his sedation is "bumped" up in response to episodes as they occur.
Another development, this time from the folks back home.
Thank you to the anonymous donor who made a generous gift to help Alex. The gift is going to COTA, the Childrens Organ Transplant Association, in Alex's name. COTA accepts donations on behalf of specific transplant recipients, and helps reimburse expenses that are not covered by insurance (such as travel, outpatient lodging, and meals,) for the patient, as well as the caregiver.
For more information about COTA, please visit their website - the address is on the intro page of this web site.
Again - thanks, and thanks to everyone who writes in. I've been reading the notes to Alex, and while it's hard to see his response, doctors and nurses tell us that he can hear what we say. The nurses appreciate hearing all the support that Alex gets, and they say it is a great help in the healing process.
Keep those letters coming.
Gene
Wednesday, November 27, 2002 at 01:41 PM (CST)
Gene here again-
No particular changes in Alex. Generally he's resting, with the help of more sedation. He still has fever - about 100F; blood pressure a little high, and the respirator is assisting him more than it was before the infection/fever Saturday. He's still using lots of platelets - 2 or 3 units a day. His kidneys are doing well, though, and everyone comments favorably, almost enthusiasticallly, on the large amount of output - something that I am sure he will be pleased to hear when he gets off the vent.
I'm still amazed at the level and complexity of care Alex gets. It takes all morning just to get through rounds with teams from the Pediatric Bone Marrow Transplant unit, as well as from from the Respiratory Therapy, Renal, and Pediatric ICU units. And there are always nurses, technicians, and therapists getting samples, adjusting settings, changing medications, and tending to Alex. And all of them coordinate with the attending nurses that stay in the room 24/7 on 8 hour shifts. It's always busy.
Lynn leaves tomorrow - Thanksgiving Day - for home, in order to get the best chance at a standby seat. She's spent the last three nights at the hospital while I had the comfort of Ronald McDonald House. My turn at night shift starts tonight.
I read the sign-in sheet, and thanks to everyone who wants to participate in the blood drive. Apparently demand is high enough that there may be additional opportunities to give, or possibly a shuttle between City Hall and SporTran.
Check with Linda McDonald or Liz Swaine when you get back to work on Monday (probably when a lot of you at SporTran and City Hall will read this.)
Anyway, everyone have a great Thanksgiving. Keep gratitude in your attitude, as my mom used to say.
Gene
Monday, November 25, 2002 at 03:57 PM (CST)
This is Gene, Alex's dad. Lynn and I are here in Minneapolis while Sharon is with Dennis and John on an R&R break for the week. This is Sharon's first trip away from Fairview/Ronald Mc Donald House since June. Instead of going on a cruise with Sharon's parents - the original plans - they will be within a few hours of here.
Alex has had a few new things come up, and his treatment is being directed at another possible infection, with some fever, changes in blood pressure, and fluid build-up. Cultures have been taken, with no results, so far. Apparently it's not unusual to not be able to pin down the source of a fever,or even prove there is a specific infection, although the symptoms indicate it. They just treat Alex for the most likely infections while they wait for more results from the tests.
So, at this point, plans for getting Alex off the ventilator are on hold until his condition improves. Now they are concentrating on upping his dialysis to reduce fluid retention, adjusting his ventilator to make his breathing easier, and regulating his sedation to make him more comfortable.
Weather here is cold, with temperatures in teens and twenties. It also gets darker a lot earlier and lighter a lot later than in Shreveport, but people here assure me it is normal. They don't get concerned here until it gets to 20 or 30 below (!) They do mention, however, that schools close and people stay indoors when it gets above 90, so I guess it's all in what you are used to.
I'm told that SporTran is putting on a blood drive dedicated to Alex on December 2nd. I mention that here, because apparently a lot of people there, as well as at City Hall read this page. Thanks in advance to you all who are putting it on, and thanks in advance to all you who donate. Alex, according to his charts, is averaging about a pint of red cells and a pint and a half of platelets in daily transfusions. This adds up to a lot of blood, considering today is the fifth month since his transplant - over 150 days out. Anyway, call Linda McDonald at SporTran for details.
Thanks again
Gene and Lynn
Thursday, November 21, 2002 at 10:08 AM (CST)
Day +148: Tip Toeing to Extubation:
The doctors are actively working towards removing Alex from the ventilator. However, after the last attempt and the lung bleeding they are trying to be very cautious. On Tuesday, after changing the vent to a very low setting—basically Alex was breathing on his own—it resulted in Alex’s chest x-ray looking “a little worse” Wednesday morning. Alex’s blood gases and his oxygen saturation levels had been good, but it required him to breathe with a respiration rate above 30 breaths per minute. They raised his vent settings to give him a little more support, so he would breathe at a slower rate and save his energy for when they do extubate him. The doctors do not feel this is a real setback, especially since they want a couple of days to reduce his sedation. They will also be doing a bronchioscopy today or tomorrow just so they can make sure they know what, if anything, they are seeing on the x-ray, before they make the decision to extubate. This sounds like a good plan to me. We are still working through some sedation/withdrawal issues, but seem now to have reached a happy medium. They have once again reduced his Atavan, but have added a propyphol drip. This is the same drug they use when Alex gets his bone marrow biopsies. It is sedating and has some pain relief attributes, but when it is turned off, it wears off quickly—it doesn’t last in his system the way Atavan does and is not addictive. However, it is not something used long term, so they will need to extubate him soon or go back to the other narcotics. Alex’s dialysis continues to go well. The last two days he has been off dialysis for 6 hours each day so they can ascertain how well his kidneys are functioning. I have no clear report on that yet.
On other matters, Lynn (Alex’s Stepmother) arrived Tuesday evening. This allowed me to get some rest back at the apartment. I pulled duty Wednesday night and she will cover Thursday and Friday night. In Alex’s state right now, it really does require a team effort. Lynn has a friend from Shreveport that is now living in the area and spent last evening and today with her. I hope they have enjoyed reconnecting.
I also want to let you know of a wonderful effort recently made by Dennis’ sister, Barbara. She wanted to find a way to do something—and boy did she! She organized blood drives through her work and church, which resulted in 100 units of credit being forwarded in Alex’s name to the local Red Cross in Minneapolis. THANKS BARBARA!!!
Tears were brought to my eyes yesterday. Elma, a woman on the Adult BMT unit with FA, left yesterday to return home with her family to Oklahoma. She had been here since January and had also experienced some complications. I can hardly imagine what it will be like for Alex and I to walk through the doors of our home when the time arrives—there are no words……..
We are Blessed.
Sharon and Alex
Monday, November 18, 2002 at 12:07 PM (CST)
Day +145: Withdrawal
Alex is doing well. He is tolerating changes to the vent, his lungs are sounding good again. His biggest issue the last two days has been the change from IV narcotics (sedation and pain medicines) to oral narcotics, and his physical responses to the change—better known as withdrawal. The goal was to have a smooth transition without withdrawal, but that has not been the case. Especially overnight, Alex became more alert, and started coughing and gagging on his vent tube because it is such an unnatural feeling. He also suffered through some shakes, elevated heart rates and breathing rates. The nurses have tried their best to manage it, giving him small doses at times of his IV narcotics. The doctors will need to readdress his sedation with me because it is obviously not enough to keep him comfortable. Alex has also continued to have some bladder spasms and discomfort, but the nurses are now on top of that so rarely does it become terribly painful for him. His dialysis is going well. His kidney functions continue to improve. He has lost some weight, which they believe is due to extra urine output that he did not have before—another sign the kidneys are beginning to work.
The holidays are fast approaching. Dennis and John have made their travel changes to be in MN for Thanksgiving. We’ve found a place to stay a couple of hours from the Twin Cities. I can’t wait to be with Dennis and John again. They only left here on Saturday and it already seems like it’s been more than a week. I’m so thankful that Gene and Lynn will be here to give me a needed respite from hospital life. We are all disappointed that we will not be joining the rest of the family on the Mexican Cruise, but I know there will be future family get togethers to look forward to. The Christmas holidays are looking bright too. Dennis and John will get to visit up here again. Both of Alex’s sisters will be dropping in—Lee, the week before Christmas and Robyn the week after Christmas. Alex is so lucky to have such loving and caring big sisters. It looks like Christmas will be BIG at the Ronald McDonald House. Lights and decorations are already going up (but perhaps they are just trying to get them up before the snow and ice arrives?).
So, all in all, life is good—blessed by the Divine, surrounded by family, supported by friends.
We are Blessed.
Sharon and Alex
Saturday, November 16, 2002 at 09:09 PM (CST)
Day +144: Loved Ones Depart
It was hard to say goodbye to Dennis and John Wesley today—they returned to Shreveport. We had a good time being a family once again. John has grown so much since all this started—he’s quite the talker, with a full imagination, lots of energy and spunk, combined with a genuine kindness. While here, he decided he would become a Green Bay Packers fan. He caught the favorable attention of Wisconsin immigrants. So, needless to say we got him a jersey--#4, Bret Favre. He went around the hospital yesterday handing out Bret Favre autographs. The good news is we will be able to all be together again in a week or so. The three of us had originally planned to go on a Mexican Cruise during Thanksgiving week along with the rest of the Swanson Clan (a gift from my Mom and Dad in celebration of their 50th Wedding Anniversary). However, in light of this week’s events, we have decided to spend the week closer to the hospital. The doctor indicated that while Alex was stable he was indeed in a delicate state and that things could change quickly. On the other side, she said his setback was minor and that it was possible he could be removed from the vent while we were gone. Under either of these scenarios, we felt we wanted to be nearby. So, Dennis and John will be returning to Minneapolis for Thanksgiving, and we will just vacation in the region. During this time, Alex’s Dad and Stepmother, Gene and Lynn, will be here with Alex as his primary caregivers, giving me a much-needed break.
Overall today, Alex is doing well. He always has to have a few ups and downs to keep us on our toes. He ran a fever this morning, but that seems to have gone away. Some blood has returned to his dialysis fluid, so once again they are removing the heparin and will decide tomorrow when to add it back. The dialysis itself is going well. Platelets have been a bit of an issue. He loses them quickly in between transfusions, which has been compounded with some recent delays in getting timely lab results and then receiving platelets once ordered. Other than that, his lungs are doing well. They’ve lowered his vent settings today, which he has tolerated well. They will be moving his sedation and pain medications to oral versus IV, because they are easier to wean that way, and he is handling his tube feedings well. Keep your prayers coming for Alex’s continued recovery, return of strength, and comfort.
Once again, we are not alone in our struggles. The one boy I mentioned in a previous posting, Austin, is no longer with us. Another patient, Erica, a 17 year old girl with Fanconi Anemia, has also just been put on a ventilator and dialysis. We try to give each other strength and hold on tight to our loved ones. This “stuff” of life is terrifying, yet humbling and enlightening. Thank you to all of you who have helped us in that discovery.
We are blessed.
Sharon and Alex
Friday, November 15, 2002 at 12:27 AM (CST)
Out Of The Ditch & On The Road Again
Yesterday was a reminder that we still have a ways to go. How quickly things can change. Alex had a pulmonary hemorrhage (bleeding in the lungs) that frightened us all. There were two episodes within an hour or so, the second of which prompted a Code Blue, bringing medical personnel running from all hallways. It was surreal for Sharon and me, knowing that for those elongated moments of time Alex was at the center of the universe and the center of focused, life saving attention. Relief came first in the form of a negative…watching medical personnel walking down the halls away from Alex’s room with no trace of sadness on their faces.
After a full assessment, the medical team considers this latest incident a minor set back. He is being given more breathing support and sedation again, but the respirator oxygen level is only 40%, which is an indication that his lungs are still functioning relatively well. We are told that this will set us back a week or so in getting the vent tube removed, if all goes well from this point forward. We were all disappointed and a bit shocked: the medical team, Sharon and I, and, yes, Alex. He was being weaned from the sedation in recent days and connecting more to the outside world. I believe he knew at some level this was not according to plan. We made sure we talked to Alex to help him readjust his expectations, in hopes of reassuring him in his semi-conscious state.
This afternoon Alex was taken down to a fluoroscopy room and an OJ tube was installed. This is an oral feeding tube through his mouth, down his esophagus, through his stomach and into his upper intestine. Installation of the tube had been contemplated last week, but since he was progressing well with the expectation the vent would be removed this week, the decision was made to forego the OJ tube; theory being that Alex would soon begin eating orally again. But with this latest setback and the prospect of eating hospital cuisine with a fork postponed to a future date uncertain, the decision was made to install the tube. Though Alex has been receiving TPN (IV nutrition), it is not a cheeseburger in paradise. For that matter, neither is sipping Isosource from an OJ tube. But it does provide a fuller, more natural formula that will deliver more calories and protein to strengthen Alex’s body, and give him more energy to breath on his own when he is removed from the respirator.
Alex is resting more comfortably now. Thanks for your continued prayers.
Dennis
Wednesday, November 13, 2002 at 09:18 PM (CST)
Day +141: A Setback
This is just a brief entry to let you know Alex had a setback today. We were disappointed because our hopes were up that he might be removed from the ventilator today. It began this morning when his oxygen saturation levels began to fall and they suctioned up a mucus plug. Later in the morning they suctioned him again and brought up flesh bled. Not long after that his oxygen sats fell again, they had difficulty bringing them up right away, and once again suctioned up more blood. We had to live through a "Code Blue" being called on him. While anxious-filled, the quick response was reassuring. Once they had him stable, they took a chest x-ray and found more white “fluffy” stuff than what was on the 8:00am x-ray. The doctors indicated that sometimes this happens—that when they get close to weaning someone from the vent, and remove the air pressure that the lungs can start bleeding again. Apparently his lungs need more time to heal. So Alex had his vent settings raised and his sedation increased. We’re not back to the beginning, but definitely a setback. At the same time as this we had a problem with a delay in receiving a platelet transfusion, and his counts were precipitously low. We’re still trying to get to the bottom of why this problem occurred.
Mom left yesterday. She was such a big help to us—offering practical assistance and emotional support during this difficult time. I have truly enjoyed my time with John Wesley. He has grown so much older in just a few months. Yesterday I got to play basketball in the RMH gym and read books to him at bedtime. Simple fun, simple pleasures—precious family time. I am one lucky Mom!
Please keep Alex in your prayers.
Sharon
Tuesday, November 12, 2002 at 02:38 PM (CST)
Ghost in the Machine or the Presence of Angels?
Alex continues to move in the right direction with small improvements that get us closer to the removal of the respirator. His respirator settings are approaching the lowest adjustments, and he is being cut back daily on his sedation. Each downward adjustment is being tolerated very well. We hope Alex will be removed from the ventilator before the end of the week. The daily consultations with the BMT team have been brief lately. It’s great to be told we are the simplest patient on the floor right now…not much to say, with the outputs being just what the team were hoping for! We like these “boring” days.
Yesterday the cardiologist dropped by to tell us she concluded that the reported heart arrhythmias were not arrhythmias after all, but “artifacts” emanating from the dialysis equipment. Alex has a number of pumps and electronic devices around his bed, each of which can throw off magnetic energy. In this case, the cardiologist believes electronic interference from the dialysis machine gave a false read to his heart signature on the monitor. However, this was fortuitous because what also was discerned in the ensuing EKG was the lengthening of the “Q-T” interval: a potentially serious condition that could, if left untreated, lead to heart arrhythmia. This lengthened interval was not present in his baseline EKG last June, and is a side effect from a number of medications being administered to Alex. Substitute medications have been made, which in turn are expected to normalize the Q-T interval.
So the ghost in the machine turned out to be an angel! The presence of angels has been discerned on more than one occasion in recent months. They tend to congregate where there is a vortex of human need; walking the hallways, listening in doorways, observing at bedside. Visual sightings are rare, but their presence can be detected in daily coincidences, like phantom arrhythmias.
John Wesley arrived last night, parachuting in from Yakima, Washington sporting imitations of Steve Irwin the Crocodile Hunter, Wrestlemania, and a heightened sense of 41/2 going on 13 year-old self-consciousness (“Don’t I look cool, Dad!”) Thanks Cousin Andy, Cousin Michael, Aunt Ann and Uncle “Teaser” Glenn. You gave John a gift of loving support and a good dose of security!
Together again.
Dennis
Sunday, November 10, 2002 at 03:39 PM (CST)
Steady Eddy…Continued Progress
Alex has continued to show slow but steady improvement over the last several days. The peritoneal dialysis is gradually bringing down his creatinine and urea nitrogen levels…two important indicators of proper kidney function. His respirator settings continue to be adjusted down, and Alex is breathing more on his own now. The respirator is on automatic and takes over if he is not breathing enough. The alarm beeps when the machine takes over, which always gets your attention and fixes an apprehensive glance on the monitors to see if there is a problem. It’s hard for parents not to become anxious when the infusion pumps or respirator alarms sound…particularly at night when you’re in the “sleep” mode. You know, eyes closed but mind in a state of parade-rest alertness, brought to startled attention when you hear unexplainable beeping in the middle of your Caribbean skin-diving vacation dream…uh oh! Are my tanks out of oxygen?
The concern de jour is heart arrhythmia…a first for Alex. Sporadically his heartbeat has become irregular, but he has self-corrected within a minute or so, and his vitals are remaining stable. This is occurring every three to six hours. The medical team (and anxious family) is watching it closely. The belief is that one of the antibiotics given yesterday for the first time might be the culprit….Flagyl. So the decision was made to remove him from that medication and observe the results. It has been 18 hours since the last Flagyl, and there have only been a few times it has occurred.
There is a lot of talk about getting close to taking Alex off the respirator. We expect the docs will talk to us on rounds today about the plan, which we have been led to believe will occur in the next couple of days or so. Gail, Sharon and I are anxious about the process, and have each volunteered the other to be present for the event. Rather than draw to see who gets the short ventilator tube, we decided when this important step of progress occurs, we will all step out of the room. Cowardliness seems preferable to the embarrassment of having the medical team resuscitate the family in waiting.
A special thanks to Betty Gorey Parent for babysitting Sidewinder and Eubie, Alex’s snake and lizard (voluntarily!) while he is away; to Barbara, my sister, who is coordinating a blood drive in Pennsylvania (Alex has needed over 100 units of blood products thus far); the Eisenstadt family for a gift of air miles; and many others who go unnamed (you know and we know who you are) for your continuous love and generous support.
It’s good to be back in Lake Wobegon. Blessings to all.
Dennis
Friday, November 08, 2002 at 02:24 PM (CST)
Day +136: It’s Always Something
One new symptom showed up yesterday to treat. An ultrasound confirmed that Alex had a clot(s) in his bladder, blocking his foley catheter. So yesterday evening they put him on Constant Bladder Irrigation (CBI). This required placement of a new catheter—one which allows fluid to be constantly pumped into his bladder and then drained in order to remove the clots. Well, in the middle of the night Alex awoke several times in discomfort because the fluid they were pumping into him was not coming out. They had to go through several procedures to flush the catheter to remove the large blood clots. The CBI is going smoothly as of this morning, but Alex once again had a stressful evening. Why is it everything happens at night?
Dialysis is still working well. Kidney functions are slowly beginning to come down now. The ultrasound yesterday showed significant improvement. (More Good News-WooHoo!) They reduced Alex’s amount of sedation again yesterday and made further adjustments on the ventilator. The ICU doctor seems confident they will have him off the vent soon. I’m not sure my Mom and I will last that long though without having a heart attack. Yesterday, for some reason, Alex started breathing on his own, stopped, but the ventilator did not back him up as it is supposed to do. Fortunately, just as it happened the ICU doctor walked in, took over, “bagged” him (hand forced oxygen delivery), and then trouble shot what was wrong with the vent. They found a leak in the tubing and corrected it. Needless to say it was an anxious moment for Mom and me. And of course, every time he takes over breathing on his own, if he doesn’t exhale the right volume the vent alarms—which to us is Alarming! While Alex has been on the vent, they suction him several times a day, removing the build up of any secretions. This would be comparable to coughing to clear the lungs. Well Alex, being more alert, had decided he doesn’t like this (who can blame him), and bites down on the vent tube which prevents them from suctioning. It also impedes the flow of oxygen—which sets off the vent alarms. We have to yell at him to open his mouth, and sometimes we have to resort to prying his mouth open. The doctors and nurses say that this is a good sign of his mental alertness and awareness, and is common. Alex’s liver functions are running high again, due to his medications and particularly his TPN. They’ve made some changes to the TPN to be more gentle on his liver, and will be doing some tests which with the results will allow them to maximize his nutrition while also being more gentle on the liver. Tube feedings, which would be preferable, have all failed because we have had disastrous results trying to get tubes placed. I feel the doctors and nurses are all still doing a great job in caring for him.
I had a real treat yesterday. For my birthday back in September, my two stepdaughters, Lee and Robyn, and their mother and my friend (like a sister), Maryanne, gave me a gift certificate for a massage. Yesterday, I finally gave myself permission to get away and do that. It was wonderful! I felt inches taller afterwards—I guess I let the stress constrict me. So thank you, dear women, for the pampering.
I’m really looking forward to the next couple of days. Dennis returns to Minneapolis tomorrow. My brother-in-law, Glenn, will be bringing John in on Monday evening. It will be so nice to have so much family here at one time. Glenn leaves early Tuesday morning, my Mom late Tuesday afternoon. Dennis and John stay until the following Saturday.
Your prayers for Alex are working—keep them coming. We have a long road ahead, but there now seems to be light at the end of the tunnel. Thank you all.
We are Blessed.
Sharon and Alex
Wednesday, November 06, 2002 at 08:51 PM (CST)
Day +134: The Drive to Breathe
The test now is to find out if Alex has the drive to breathe and then to provide sufficient “incentives” to encourage him to do so. Yesterday, Alex did breathe some on his own, for about 2 hours, before turning it back over to the ventilator. The breaths were few, but of large volume. Today they decreased his sedation a little and then made another minor ventilator adjustment, but I have not seen him breathe very often or for any significant length of time on his own. Maybe I need to agitate him some more. (Isn’t that what mothers are best at?!) Alex’s dialysis is still working well. They feel they have him where they want him fluid wise and now would like to see if they can pull off more waste product. To do so, they will increase the volume of PD (peritoneal dialysis) fluid from 600 cc to 700 cc.
We have more good news. Alex’s CMV (cytomegalavirus sp?) test was again negative. He went another day without needing a red blood cell transfusion—and while he received platelets, the length of time between transfusions has increased. Alex’s skin biopsy showed that his rash is nothing to worry about—blocked sweat glands—and should resolve itself. The biopsy still showed minor skin GVHD, but they said that could be treated symptomatically, just as we have been doing in the past. As a result, today they cut his methylprednisone (steroid) in half. That should help with his blood pressures, his insulin, and reduce his immune suppression.
Alex’s liver is still being impacted by the TPN. They tried to insert an oral intestinal feeding tube (vs. stomach) last night and it didn’t work. I think they’re going to hold off for now and just hope he’s off the ventilator soon and back to eating and hope his liver holds out. (Me too!)
Mom has been spending countless hours sitting in the hospital room, watching all the doctors come and go and helping me to pass the time with conversation and cards. However, I think she has been surprised how busy the day is. Alex keeps both the nurses and doctors quite busy. However, since he has a nurse in the room with him at all times, we have been able to eat lunch out and go over to the RMH for dinner. Once again, she’s going to take the night shift. I hope for her that it is a quiet one.
Please keep in your prayers another boy Alex’s age, Austin, who has been on a ventilator and dialysis but as of today is not doing well.
We are Blessed.
Sharon and Alex
Tuesday, November 05, 2002 at 04:15 PM (CST)
Day +133: Holding Steady
Yesterday was relatively quite. The dialysis docs still feel that Alex’s peritoneal dialysis is working well. He has lost weight each day, and as a result they have increased the amount of nutrition he can receive. At some point if his weight continues to drop they may need to cut back on the amount of fluids they are pulling off of him. But again they say all is good, it is just a matter of tweaking the system. There is still no real sign of significant improvement in kidney functions, but they say it could take some time for his kidneys to heal.
They will be inserting a feeding tube today, orally, which passes through his stomach to his intestine. It will take a few days before he receives full nutrition by way of the tube. They have to take small steps at first to make sure he tolerates the feedings. In the interim he will continue to receive the TPN. Once again though they want to remove him from the TPN because his bilirubin is up as well as his liver enzymes. For those of you who have followed this page for awhile, we faced this same issue on previous admissions.
Yesterday also, the doctors actually talked about developing a plan to remove Alex from the ventilator because he was doing so well with the changes made to the “Peep” (pressure) on the ventilator. So, they decided to change the number of respirations per minute from 20 to 18. He seemed to tolerate that well, but he was not breathing on his own above that rate which is what they wanted to see. They thought they would “challenge” him a little, and late yesterday (11:00pm) they changed the rate to 16. Apparently he did not breathe above this rate, and he became “acidic”, so they turned his rate back to 18 and then again to 20. The ICU doctors said they may try approaching it a little differently through air volume this time. They also felt they may need to come down on his sedation if they expect him to start working more on his own. The nurse has indicated that perhaps he is just not ready, or that they went too fast. She also said that it is not unusual and not to be disappointed, and that Alex from a medical perspective, has not been on the ventilator that long. The good news is that he is holding his own and that his chest xrays have shown improvement. I do so look forward to the day when Alex will be present with us—in mind and body.
The dermatologist came by to look at a rash Alex has developed and did another skin biopsy. It was more precautionary to eliminate GVHD, a viral infection or bacterial infection. We should get results today. If it is not GVHD, they will cut back his steroids today. That should help with his blood pressure and also reduce the amount of immune suppression. So that would be a good thing. Other good news—Alex has not needed a Red Blood Cell transfusion since Halloween (!?), and platelet transfusions are down to once a day. His mouth is also looking better now that it is being given consistent care. It is hard to think back at where we were a little over a week ago—boy was that scary. Now I feel I can actually breathe again—the task now is to be patient.
It has been great having Mom/Grandma here. We celebrated her birthday with a nice breakfast at the Raddison. Her company “hanging out” in the hospital room, has made the days pass more easily. She also spends time talking to Alex, reading him the comics. Last night she even spent the night in the room, affording me some needed rest at the apartment. I can’t imagine how we would be getting through this without the support of our family and friends. So many of you have once again reached out to us-thank you. It means so much, and buoys our spirits.
We are blessed.
Sharon and Alex
Saturday, November 02, 2002 at 03:53 PM (CST)
Day +130: The Sun is Shining!
It is a beautiful day in Minneapolis. The skies are clear, the sun is shining, the air is crisp. Alex is continuing to hold his own and show the small, but oh so important steps of improvement. The peritoneal dialysis is going well. Alex is now at what they call his “dry” weight, meaning they have pulled off the extra fluid that he had been retaining when his kidneys slowed down. This is particularly good for his lungs, i.e., no extra fluid in the lungs. They have also gone down on his “Peep” setting on the ventilator again today, or the pressure provided to hold the air sacs open. Yesterday it was 11, today it is 10, and he is continuing to hold his oxygen saturation levels. I am so thankful to have an uneventful day, and the good report. I didn’t even ask the doctors many questions—just wanted to have a day to enjoy his turn around. We certainly have a ways to go, but this has allowed me to think that I might once again be able to converse with my son. I know Alex is not a big talker, but his few words will be like music to my soul.
The two big medical issues today are how to best manage his high blood pressure. He’s on 4 different meds now and they’re just trying to figure out the best “recipe”. More importantly was to come up with a consistent plan for the nursing staff to follow. Alex has also had constant oozing of blood from his mouth since he was vented. ENT doctors came by and looked at his mouth. They are going to try to keep his mouth moister, by keeping Aquaphor around the mouth area and placing a trough under his mouth/chin to provide humidity, and then on top of that to rinse his mouth with Magic Mouthwash (contains Lidecaine), to help restrict some of the blood vessels. They’ll give this a couple of days to see if it works. I’m hoping it will give him some additional comfort.
It was hard to say goodbye to Dennis this morning. It was so nice to have him to lean on for a few days, to not have to carry all the responsibility of Alex’s care. And he was in there swinging, asking questions, and advocating for what he thought was best for Alex. These were some hard days and we pulled through them together. Gene’s support while he was here is much appreciated too. Teams are stronger than individuals. To shore up the “team”, my mother is arriving tonight. She’ll be here a little over a week, until Dennis and John return on Nov. 9th. This wonderful lady has agreed to spend her 70th birthday in a hospital room with me! Thank you also Dad-I know this was a decision made by both of you.
Once again, We are Blessed.
Sharon and Alex
Friday, November 01, 2002 at 10:06 AM (CST)
All Hallows Eve / All Saints Day
It’s all where you place the emphasis…on Halloween or All Saints Day! This time is both scary and celebratory, and so is Alex’s condition. October 31st began with a three-hour crisis of bleeding in the peritoneal cavity and moderate blockage of the catheter (scary). The decision was made to flush the catheter (under sterile conditions, so I was not in the room). The medical team once again worked with all their efficiency, creativity and experience to favorably resolve the challenge (celebrate). Had they not been able to ameliorate the clotting problem, Alex would have returned for exploratory surgery. From 3AM on the peritoneal dialysis began working like a charm. Throughout the day the color of the fluid has steadily gone from red to pink lemonade and his blood pressure was down (celebrate). However, again early this morning Alex’s blood pressure started creeping up (scary). We have found that when his steroids are increased, together with everything else that is going on right now, it is hard to manage his blood pressure. The steroids were doubled last Sunday, and we expect they will begin a taper this Sunday. Throughout yesterday and this morning his respiration has been very good and his lungs are sounding much better; so much so that today we expect they will begin to recruit Alex’s lungs back into action (celebrate).
So, to recap: the “celebrates” have it over the “scaries”, 3-2! We are winning this game, but it is a long season.
Over the last week Sharon and I have again been witness to the central role of blood and blood related products in our life. Without generosity of blood donors we wouldn’t be writing this journal entry. So if you are able and so inclined, make your way to a donation center and become a saint on All Saints Day!
Celebrate!
Dennis
Wednesday, October 30, 2002 at 04:19 PM (CST)
On Dialysis
On Monday a decision was made to put Alex on kidney dialysis. The cumulative effect of several months of drugs and recent high blood pressure caused his kidneys to call a time out. The decision was made to do peritoneal dialysis, as opposed to hemo dialysis. Hemo dialysis is most frequently used, and is a 4-hour filtering of the blood through an “artificial” kidney to remove toxins from the blood. However, this method can cause significant blood pressure fluctuations, since the blood is taken out of the body to clean before replacing. Peritoneal dialysis is done though a process of fluid (not blood) exchange in the abdomen. The blood is never directly filtered.
In both methods of dialysis, a tube is inserted through a surgical procedure. Alex was scheduled for surgery at 10:15 Tuesday morning. Dr. Acton, the surgeon, expected the procedure to take an hour, and told us he would see us in the family waiting room between 11 to 11:30. At 1PM we got a call from the OR nurse that there were complications, Alex was doing fine, and Dr. Acton would be out soon to talk to us. At 2PM we met with Dr. Acton, who told us that during the process a blood vessel had broken causing significant bleeding in the peritoneal cavity. Throughout it all, Alex’s vitals were very stable, and they took their time to relieve the bleeding so as not to require another surgery.
Alex returned to his room around 3PM and has been resting comfortably ever since. He is in deep sedation. Dialysis began before dinner, and in this method, continues around the clock on 30-minute cycles. Dialysis fluid is gravity fed into Alex’s abdomen for 6 minutes, it “dwells” (remains inside) for 20 minutes, and then is pumped out for 4 minutes. During the “dwelling” phase, the exchange of toxins and minerals takes place through a process of osmosis and chemical bonding to the dialysis fluid. In addition, excess fluid is drawn off, reducing his total fluid volume (sort of like artificial urination). It is quite remarkable. This gentle process is being fine-tuned at this time, and seems to be working. His blood pressure is beginning to drop, and with it they are beginning to wean him off some medications.
The protocol now is rest, rest and rest. Alex will be sedated and on the respirator and dialysis for the next week or two…giving his body a chance to heal. If there are no new complications, they would then begin to wean him. So it will be awhile before Alex is back on his feet, which in itself will take some rehab time after being in bed this long.
But we are optimistic. Nothing has cultured in his lungs or upper GI tract. He still does have the adenovirus in his lower tract, however. This will be a matter of time to resolve. It does not appear to have spread systemically, though they are monitoring that and can treat it if it does. Alex’s blood pressure is beginning to normalize. His lungs are beginning to clear. His IV nutrition is beginning to be increased now that the kidneys have been given a break. We are hoping for some non-eventful days and nights, stable vitals, and gradual small steps of improvement.
Alex’s chaplain was in today to offer prayer and do some energy work. Though in heavy sedation, Alex knows we are here, and we believe derives comfort from all the caring souls both here and from you as you read these updates.
Finally, last night was hopping here on the University of Minnesota campus. Senator Wellstone’s memorial was held just a block from the hospital. It was energy for my liberal soul!
Keep those thoughts and prayers coming our way.
Dennis.
Monday, October 28, 2002 at 02:45 PM (CST)
Still on the Respirator
It has been a busy weekend for Alex and the family. On both Saturday and Sunday Alex did not do as well. He had a tough night Friday night, running a fever and high blood pressure. We had also switched to a different sedation regimen after Alex experienced a slight allergic reaction to the morphine (itchiness). As a result, he was less sedated and was more aware of the respirator, causing him to have a more restless night.
A bronchoscopy on Saturday revealed bleeding in Alex’s lungs, without certainty as to the cause. The doctors suspect it is a combination of the high blood pressure he was experiencing and possibly GVHD, CMV or some other virus…even though lung and GI tract cultures are negative, which is good. As a result, Alex is now under heavier sedation and the respirator is doing all the work to give Alex’s lungs the support they need to heal themselves. They are also administering additional drugs to treat possible infections that have not yet cultured out. He still can hear us though he cannot respond much. So we try to make our presence and assurances felt on a regular basis.
Sunday we saw the added complication of creatine elevation, indicating that Alex’s kidneys are struggling to keep up with processing all the fluids and medications that are being administered to manage his symptoms (we counted 15). So now we have kidney docs and technicians on the team. It is likely that today or tomorrow we will begin kidney dialysis to provide a break for Alex’s kidneys, which have been fighting hard over these several months.
Dr. MacMillan, our primary BMT physician, has been a clear voice and light in guiding us through these bumps in the road. She has assured us that she will never allow Alex to become an object of medical practice when the game is over…and the game is far from over. She believes that, given what Alex is currently presenting, there is still a lot of room to support him and allow his body to heal itself. The team has seen many other children in similar conditions turn the corner. At the same time, she expects that he will get sicker before he will get better. So we are in this episode for a while: probably two or three weeks before significant progress will be made.
Through it all we are believing. Besides the very able medical team here, you all are the arms that hold Alex up, and for that we are grateful. Gene, Lynn, Sharon and I spent some time yesterday planning the next few months to have adequate support here in Minneapolis. Gene and Lynn are planning to be here over Thanksgiving. Sharon, John and I are planning to be here for Christmas…hopefully a white one! In between we are identifying support for Sharon, since we believe strongly that being with Alex at night in the hospital is important, and a tag team to alternate nights is essential.
John Wesley, who is presently in the loving hands of Uncle Glenn, Aunt Ann, and cousins Michael and Andy in Washington, informed me yesterday that when I return to Shreveport (on Saturday), he intends to stay in Yakima for a while…he really likes it there. He told me that Abbey, their border collie, gets angry and barks a lot if no one plays with him…just like John when Daddy doesn’t play with him! I guess I’ll have to promise to play with him more in order to get him to come home.
It is a challenge balancing our emotions in this time of uncertainty. There is a temptation to get immersed in the facts and particulars of Alex’s medical condition as a way to cope. We try to sift the daily and hourly flow of medical information to ensure that we are both doing what is right for Alex, as well as providing him with as much physical comfort and encouragement as possible. It is hard to imagine what Alex must feel like being so out of control.
Sharon raised the question what the “lessons” might be in all of this. We ask this and a thousand other questions often. For me the fundamental challenge is to be present in this moment. This is our life…these are the best of times and the worst of times…and in times like these we have the privilege and opportunity to get closer to the truth if we allow ourselves.
Keep us in your prayers.
Dennis
Friday, October 25, 2002 at 09:40 PM (CDT)
On the Respirator
Thursday was a difficult day. After significant difficulty breathing, Alex was placed on a respirator early Thursday afternoon to give his body a break. He was not absorbing enough oxygen and getting quite tired from breathing harder and harder. The respirator was a godsend. By the time that I arrived at 6PM on Thursday evening, Alex was resting quite comfortably with 14 breaths per minute (compared to 50 before the respirator), and had a stable night. Alex is moderately sedated so as not to fight the machine, but he can hear us and responds in telling us (not by words but with nods and small jestures) when he is in pain or there is a problem...which has been minimal.
Today, has been a good day, with news from Dr. MacMillan that she was amazed at his progress (we weren't amazed...we know Alex...he's a fighter). The x-ray of his lungs showed improvement. He also had an endoscopy (which I observed at bedside) to find out why he was bleeding in his GI tract. The bleeding is coming from his mouth and throat, not the stomach or small intestine. It appears it is from the GVHD/CMV ulcers from before. So we need to do some healing there. The biopsy should confirm what is causing the bleeding, then we will know how to attack the problem. We await further culturing to figure out the lung problems. Nothing has cultured positive so far. Today Alex was also more alert, opening his eyes quite frequently and nodding when spoken to...registering that he knows we are here and pulling with him.
Right now we are guardedly optimistic, but we have learned that things can change quickly. Alex continues to respond positively to the respirator, and is already being slowly weaned. But we can expect a week to two weeks before he is completely breathing on his own. And then we have rehab after laying in the bed for so long.
So the story goes on. But we continue to be amazed at the quality of the staff here...compassionate and competent.
Lift them high for Alex...your glasses and your prayers...he's fighting the good fight! And we continue to be blessed by all the love and tangible shows of support.
Dennis
P.S. Thank you Ann Swanson for the two weeks of caring support in Shreveport, and for taking John Wesley on his own adventure back to Washington.
Wednesday, October 23, 2002 at 08:26 PM (CDT)
Day +120: A Bad Two Days
I don't even know how to begin to write this entry. Alex has had two extremely bad days.
Yesterday morning at 6:20am Alex woke me up saying "Mom, I'm jerking and I can't make it stop" and then proceeded to have a seizure. That was followed by a seizure at 7:10 and some continued seizure activity in the late morning. An MRI was conducted as well as an EEG. They believe his seizures were again caused by CSA brain toxicity as was his seizure in July. They believe that due to his diarrhea that he was not absorbing the oral anti-seizure medication. They put him on an IV medicine, and for now that seems to have stopped the seizures. It was not only hard to watch Alex go through that, but much more so than last time he was disoriented, and physically unable to do things for much of the day. He couldn't even tell you what two teams were in the World Series!
Today has not been any better, and has in fact been more worrisome. Alex since early this morning has had difficulty breathing. He was on an oxygen mask for much of the day, and because of continued difficulty is now on a BiPap machine, which forces air into his lungs so he doesn't have to work so hard. If this doesn't work, the next step will be a ventilator. They today did find some "stuff" in his lungs, they're not sure what yet, but are actively treating everything they think it could be (e.g., viral or bacterial infection, blood from stress, or something aspirated yesterday during or after the seizure). They will be doing another chest xray tomorrow morning and for now just want to get him stabilized.
We were moved down yesterday to the Pediatric Bone Marrow Unit, because Alex needed an ICU prepared unit and one-on-one nursing. I can't begin to tell you what good nursing and doctoring we're getting right now. It is nice to know that when you really need it, it's here. As hard as this has been, my comfort is in knowing he is getting the best of care.
Gene is arriving tonight. Dennis is arriving tomorrow. My friends at the hospital and Ronald McDonald House have also gone out of their way to be supportive. Their strength gives me strength.
Please keep Alex in your prayers. He truly needs them now.
We are Blessed.
Sharon and Alex
Monday, October 21, 2002 at 08:29 PM (CDT)
Day +118: Hello Again
I apologize for the lack of updates. I decided to enjoy the visit by my mother and sister, and to take care of Alex. We're still in the hospital. Alex is still fighting the virus. He ran fever at first, it went away, we got off the antibiotics, the fever came back, and so now we're back on the antibiotics. We've had several urine cultures, awaiting a mouth culture, had sinus, chest and gastrointestinal CT scans done today. Tomorrow Alex is going to have another GI scope, to see the status of the GVHD in his esophugus, since they have not rechecked that for awhile. He stills has mucus in his throat and mouth that has never quite gone away. Once again, his cyclosporin levels are low too. On top of that he is not holding onto his red blood cells or platelets. They checked and he indeed has antibodies to his RBC's and is "hemolizing" them. The doctor believes that this is simply due to his changing of blood types--from his old blood type (O+) to that of his donor's (A-), and that this will just take some time to correct itself. They're running another antibody test for his platelets. If that comes back positive, we would be using a single donor for his platelets.
Because of the virus Alex has, he has not been eating well. We are once again faced with the dilemma of how to deliver to him his nutrition. The doctor's would prefer to do the NG tube (the one down the nose that they have been unsuccessful placing in the past), because of multiple benefits it delivers for the stomach and liver, and the multiple negatives of using TPN--high glucose/insulin, hard on liver, etc. We'll make a decision tomorrow. If we go for it, they would place it while he was asleep during the GI scope procedure.
The worst part of this admittance, is that it is so hard on Alex. He is frustrated that he once again is not feeling well. The last couple admissions he felt pretty good so it was not a big deal. I know he is getting tired of this hospital life. He doesn't complain much and knows at some point things will be better. Friends and family--mundane news of home, school, activities, things you're doing--I know he'd really love to hear from you!
We were sorry to see Kathy and Mom/Grandma leave. I know they do not feel they helped out much since we spent most of our time sitting around the hospital room. All I know is we enjoyed having them to talk to, the laughs, and rooting for the Giants (keep rubbing those lucky socks together girls!). And thanks to them I have a clean apartment to return to. So thanks for coming. Word on the homefront is that my sister Ann, is doing great with John, including the use of good behavior charts. I think John is going to turn out to be one great kid because he has been fortunate to have so many loving "guides" in his life. Thank you all.
We are Blessed.
Sharon and Alex
Wednesday, October 16, 2002 at 09:16 PM (CDT)
Day +113: Our 7th Admission
I believe Alex is out to set a record. Last night we were admitted to the hospital, our 7th post transplant admission. Alex had fever--102.4, chills, and diarrhea. It was a late night admission, so we didn't get done with the paper work, interviews, etc. until about 2:00am, so we were both tired today. My mother and sister accompanied us to the hospital. It was sooo nice to have their support.
We found out this afternoon that Alex's culture came back positive for an intestinal virus. That's actually good news--not an infection or GVHD, but have not talked to a doctor about it. We are still waiting on the blood cultures. I was concerned about GVHD because once again Alex's cyclosporin level, which prevents GVHD, fell below therapeutic levels. We are again back on IV CSA (cyclosporin). Alex believes however that his mouth saliva has again increased, and that his mouth just tastes "icky". This is our third time going through this cycle, it is frustrating to feel like we're not making progress because we can't keep a CSA level each time we go back on oral CSA. And until then, we can't taper the steroids, which while they help his GVHD, keep him immune suppressed. So time wise, in terms of going home to Shreveport, we're at a stand still. We got good news today too. We came back with our second negative CMV antigenemia test today.
Prior to coming in, we were enjoying being on the outside and having company. Sunday we took Grandma Gail to the Minnehaha Falls, drank hot chocolate and ate popcorn. Monday, Mom/Grandma and Kathy kept us company in clinic. Tuesday, after clinic, the girls went out to lunch. Pam, my Care Partner stayed with Alex. Afterwards, we took Alex out in the cold on a "wheelchair" walk, stopped for hot chocolate, and later in the evening played a game of Yahtzee. And guess who won? Alex of course! And then he capped the evening off by getting sick. I am so glad Mom and Kathy have been here. They have made it so much easier for me to get geared up again. However, after they both saw snow flurries here today, they're both going to want to get back home to their warmer climates.
As frustrated as we are, our future is still very hopeful. Please say prayers for a family I've gotten to know who received bad news yesterday, whose options for their son's treatment have run out. Our problems pale in comparison.
We are Blessed.
Sharon and Alex
Saturday, October 12, 2002 at 08:57 PM (CDT)
Day +109: Discharge!
As hoped for, we had a short hospital stay. Alex's fever never returned and all cultures were negative. Alex has been having some high blood pressure readings, caused by the steroids. Since it is temporary they are not concerned. We'll go to clinic tomorrow to get it checked and to see if they want to start him on regular blood pressure medication.
Alex is now having frequent platelet and red blood cell transfusions. We're not sure why. An antibody test was run for the platelets and came back negative (my understanding is that you can develop antibodies which cause you to reject your platelets). A test for the red blood cells has not yet come back. Alex's bilirubin is up again, which could be a result of "hemolizing" his red blood cells. The doctors also indicated that whatever caused his fever or the CMV could also affect his platelets and rbc's and that it just might take time for them to recover. We must just stay patient.
My mother arrives tonight. It's always so nice to have company. There's not a lot places we can go or things we can do, so a change of faces really helps. My sister, Kathryn, follows Mom, arriving Monday morning. So this should be a fun week for us.
We are blessed.
Sharon and Alex
Thursday, October 10, 2002 at 08:46 AM (CDT)
Day +107: Life is a Yo-Yo
Just a quick update--I tried to do an entry last night but the page was down.
Believe it or not, we are back in the hospital. Alex ran a little fever yesterday morning along with a headache and knee pain. Because he is so immune suppressed from the GVHD and steroids, the doctor wanted to admit him. She felt if she waited and the fever was from something bacterial, it could get out of control. So we're running a bunch of cultures, doing a bunch of tests, and taking antibiotics. The good news is that he has not run fever since yesterday morning, so hopefully this will once again be a quick stay. Alex handled the disappointment rather well. More good news--Alex's CMV antigenemia test, which he is taking the Foscarnet for, came back negative.
We had fun watching the baseball games last night, even if the Twins lost. At least the Giants won. Alex received a "care package" from the Twins yesterday, which included a division championship hat, a poster, and most importantly, a Homer Hanky. I'd written them a couple of weeks ago when we were admitted and he was feeling a little down. Little did I know it would help to make another admission a little easier. I keep hoping the next one will be our last. But as they say around here--Have no expectations, live a day at a time.
I'll try to do an update again tonight. Please keep us in your thoughts and prayers--for patience and the return of good health.
We are Blessed.
Sharon and Alex
Tuesday, October 08, 2002 at 07:55 PM (CDT)
Day +105: A Visit with the Doc
Today we finally got to visit with Alex's Primary Physician, Dr. MacMillan. We talked today how because we've been in and out of the hospital we've seen a lot of doctors, and how we haven't seen her very often. (The physicians only have 2-3 days per week when they are in clinic. Then the team of 7 bmt doctors rotate every 2 weeks for the inpatient care.) She agreed and said she would make a note to Alex's records that another doctor was not to make any changes to his "plan" without consulting her first. This gave me some comfort to know she would be overseeing more closely Alex's care from here on out.
The results of the bone marrow biopsy were confusing. The doctor said the biopsy showed only 30% cellularity--last time it was 80%. They believe that the biopsy however is not representative, that the sample did not go deep enough into the marrow. The doctor was not concerned.
Alex's plan for his GVHD is to keep his CSA levels up and prepare for a slow steroid taper. The Foscarnet will be continued for another 7 weeks for his CMV. Tomorrow I should know the first results of his CMV antigenemia test since starting on the Foscarnet. Alex will get another chest CT scan to ensure that it is clean, but we may have to continue with the IV Amphotericin (which makes us go to clinic 3 times a week), until his liver enzymes return to normal. We're also doing an ultrasound to check if he has any gallstones, because of the elevated liver functions. Other than that, Alex has still had a problem holding onto his platelets. The antibody test to see if he was rejecting them, was "lost", or never taken, or so will be repeated. It will be another few days before I know the results of that. The doctor indicated both the GVHD and CMV could also be affecting that. He also doesn't seem to hold on to his Red Blood Cells as long as before either. Now that he is off the Ganciclovir (which did affect his counts),watching counts will now be an issue for me.
The other "disappointing, but not unexpected news" from the doctor today was that she anticipated we would be here through Thanksgiving. The Foscarnet has 7 more weeks and we can't go home on the Foscarnet. She said she would like to see us home by Christmas. But I know better than to get my heart set on that. We will go home when Alex is well enough to go home. Alex took the news pretty well, although I know life here--clinic, tv, school work are getting boring. We're going to need to find more interesting outings to take in.
The weather here is cold, today was better. Twins fever is running high--we're rooting them on. Wave your "homer hanky" if you got one!
We are blessed.
Sharon and Alex
Sunday, October 06, 2002 at 08:49 PM (CDT)
Day +103: Back Home
Alex got discharged Saturday around dinnertime. Everything is going fine. Because Alex's creatnine level (a measure of kidney functioning) was up they moved his Foscarnet to a twice a day dosage instead of 3 times a day. Therefore, delivering it IV is not too bad, not the loss of sleepeing hours that 3 times a day would have required. They also moved Alex's cyclosporine from IV to oral. We get his CSA level checked tomorrow--hopefully this time we can keep his CSA level in the "therapeutic" range.
Alex's mouth seems to be getting better, but it sure is slow progress. He still generates a bit of mucuous. He is also still on a high steroid dose--don't know when they will decide to taper it. He is getting pretty round in the face as a result. Tomorrow we should know some preliminary results from the bone marrow biopsy and Tuesday afternoon we'll find out whether the Foscarnet has pushed the CMV back.
We've just recently had another "complication". Don't know if it means anything yet. The last 3 platelet transfusions have not lasted long at all for Alex, just a couple of days. This is different than before and could mean he has developed an antibody, causing him to reject the platelets. We should have the results tomorrow from a test we took on Saturday. I have no idea how they would treat this. I guess I should not worry about it until I know the diagnosis.
The important thing is we're out of the hospital, feeling fine, and on the road to recovery. Jenny, my friend, left this morning. We enjoyed her visit and her help. She got the full hospital experience with us. She (and her husband, Sam) have always been so generous to our family.
We are blessed.
Sharon and Alex
Friday, October 04, 2002 at 08:48 PM (CDT)
Day 101: Not Home Yet
Well, Day 100 has passed and was uneventful, with no certain date in sight for when we might be able to return to Shreveport. But, Alex is improving, we remain patient, and know that that day will come. We certainly don't want to push to come home before Alex is physically ready, because once we return, we don't want to come back.
We hope to return to RMH tomorrow or Sunday. Alex has had to have some calcium supplements from the side effects of the Foscarnet. Once they feel they have everything balanced, we will be discharged. The only complication I see at this point is figuring out how I'm going to administer the Foscarnet 3 times a day, 8 hours apart, with one hour flushes before hand. The only way I can figure it is that we would have a start time of 6:00am in the morning. Our end time would then be 1:00am. When do I sleep? Perhaps they can work out something differently at home. If not, I'm going to have to get good at napping during the day.
Alex had his bone marrow biopsy today. It was quick and "relatively" painless. Just a little back/hip discomfort. Jenny stayed with Alex for a few hours today so I could do a few things. As always its nice to have the opportunity to take care of personal business--gives me some sense of control over life.
Before I forget, tomorrow is Dennis' birthday. HAPPY BIRTHDAY!!! Dennis has had a lot of pressure on him with work, and taking care of John and John's activities, paying bills, etc. I couldn't be doing this without him.
Alex is doing well--it's easier being "in", now that the playoffs have started. It makes for good TV.
We are blessed.
Sharon and Alex
Wednesday, October 02, 2002 at 09:34 PM (CDT)
Day 99: The Hospital Once More
We cannot seem to stay out of this place! This one should be short though. We were in clinic today, and found out that his CMV antigenemia test came back positive again (one of the herpes complex of viruses that could cause problems if not kept in check). The doctors wanted to switch him from the ganciclovir he was getting, fearing he was resistent to it, to Foscarnet. Foscarnet requires the first doses be delivered as an inpatient because of its side effects, which most commonly affect your calcium and electrolytes. While on the Foscarnet, which he will get 3 times a day, they will take blood draws every 6 hours. Once they figure out his response to the drug and the dosage to supplement him, we should be discharged. We know we will stay until after his 100-day bone marrow biopsy on Friday, perhaps leaving that afternoon or Saturday morning. After that the Foscarnet can be given at home and at clinic.
So far we have had a good visit with Jenny. We're so glad she's here. It has made going back in the hospital easier. And with the playoffs, we're enjoying sitting around and watching the games, so there's not much difference between the hospital room and our RMH room. Go Yankees! Go Twins (for now)! Go Giants (that's for you Mom)!
We are Blessed.
Sharon and Alex
PS. I've updated the front page with room & phone #s.
Monday, September 30, 2002 at 08:11 PM (CDT)
Day +97: Catching up in Clinic
We spent about 4 1/2 hours in clinic today. We had to catch the doctors up on Alex's status since his hospitalization. After visiting with the doctors Alex received his Amphotericin (an antifungal) which takes a total of 3 hours. We tried to do the Ampho on less benedryl for the premed, and while Alex had no reaction, he still slept a good portion of the day. Next time we are going to ask if he can use a drug called Atarax (sp?) because Alex said while that makes him sleepy, once he wakes up he's awake. On the benedryl he feels groggy all day. Since he has to have Ampho 3 days a week, Alex basically "loses" those days and it interferes with schoolwork and eating. It may take a few days, but we're trying to improve his quality of life while on this drug therapy.
Other than that clinic was ok. Tomorrow we should find out his CSA level, whether his CMV antigenemia is negative or positive, and sometime this week the doctors will develop a schedule for Alex's steroid taper. Tomorrow Alex will need platelets again. He only went 3 days since his last transfusion, which is the shortest time a transfusion has ever lasted. He'll also have an eye appointment to verify once again that there is no CMV in Alex's eyes. It could be serious, so they want to make sure they check again.
What we're really looking forward to is the arrival of one of my best friends, Jenny. She arrives late tonight. Hopefully she'll bring us a few laughs, a few hugs, and simply some time to enjoy her company and connect us to home.
We are blessed.
Sharon and Alex
Sunday, September 29, 2002 at 10:08 PM (CDT)
Day +96: Home Again, Home Again, Jiggity Jig
Not much news today, but good news. Alex was discharged from the hospital at about 1:00pm today. We've enjoyed our afternoon at the RMc House. I spent most of the time unpacking, coordinating with the Pharmacy the delivery of our IV meds, and doing laundry. Alex spent time downstairs in front of the fire in a sitting area off the main kitchen. We didn't cook today. We had KFC for lunch and Chinese food for dinner. Alex ate better today than yesterday. We'll keep working on it!
Our hopes for now are that we stay out of the hospital, that the steroids continue to "heal" Alex's GVHD, that Alex stay free of infection (the steroids suppress his immune system), that his CMV tests continue to be negative, that his hemmorhagic cystitus go away, that Alex's endurance grows, and ultimately that we get released to return to Shreveport. In the meantime we'll do what we can and enjoy the company of our visitors and new friends here in Minneapolis.
For those of you who want to know how you can help--please read the guestbook. Maryanne has made an entry and provided information on how you can donate blood and be of assistance to Alex and provide the "gift of life" to someone in need. Thanks Maryanne for your donation, the information, helping out with John, and being part of our family.
We are blessed.
Sharon and Alex
Saturday, September 28, 2002 at 12:00 PM (CDT)
Day +95: Life Looks Better!
It's amazing what another day can bring. Alex and I had fewer "struggles" yesterday, and much improved our spirits by a trip to the gift shop. As many of you know Alex likes to shop. We decided it was time to get in the Halloween spirit and purchased some Halloween items--a spider and some bats to hang in the room, and our favorite, an electronic skeleton head, supported on a bone, which makes all kind of eary noises and has a fake flame coming out of its head that you can turn on with a fan. It is tucked in beside Alex in his bed, and has given the nurses and docs a laugh too.
We have some good news too. Alex still has not run any fever since admittance. Therefore today they are going to stop the Vancomycin. They always give him benedryl as a premed to the Vanco, so we should also have a more alert day too. We have continued to have some glucose problems from the high steroids and the TPN. Because they want to get us out of here soon, they don't want to start us on insulin. So they are going to stop the TPN tonight and see how well Alex can eat and drink today. Our final option is always to go to an NJ Tube (the tube down the nose into the intestinal tract) if at some point he cannot eat enough. So send your energy this way saying "Eating is fun, Eating is good, EAT, EAT, EAT! After Alex gets platelets, they are going to give us a day pass so we can go back to the apartment to eat as an encouragement.
Other good news, Alex's CSA level is even higher to 273. They're going to recheck it on Monday. Perhaps we can even get it a little higher. The "therapeutic" range is between 200 and 400. With GVHD present they like it as high as possible without stressing the kidneys. They are also talking like we might be discharged tomorrow assuming today is a good day. WOO HOO!!
I had a beloved birthday. I heard from many family and friends--I felt your warmth and kindness and it sure picked me up. My Care Partner, Pam, also gave me a birthday cake that was delicious and such a special treat. It looks like we will be having visitors once again. My good friend, Jenny, arrives Monday and my Mom is rescheduling her visit for mid-October. It sounds like one of my sisters (Kathy) may also be coming out and my other sister (Ann) is going to help out by traveling to Shreveport and holding down the homefront. As I write this I realize once again how fortunate we are--the support of friends, family, and even of many we do not know, and that our health challenges in the scheme of things are manageable. Many here have had to face receipt of more difficult news than we, and must maintain the search for treatment options and hope. I am always mindful of them and and God to give them the support and strength we are so lucky to have.
We are blessed.
Sharon and Alex
Thursday, September 26, 2002 at 07:41 PM (CDT)
Day +93: Back in the Hospital--AGAIN!
As I mentioned in past journals, Alex had been running low grade fevers. His temperature was higher when we went into clinic on Wednesday, 102.1, so they decided to admit us. It took most of the afternoon to get this done. It is always time consuming and exhausting to go through the admission process.
Needless to say, both Alex and I have found it hard to "get up" for another go around. We're doing our best, but both of us would admit we've been a bit testy--with each other, the nurses and particularly the residents (y'know, the doctors who know enough to be dangerous). The doctors are primarily concerned about the fever and feel once it is under control we can be discharged. Alex is on antibiotics and so far we have not run any fever. The doctors also agreed that his mouth had worsened and that his GVHD had begun to resurface. They said it could be a result of low cyclosporin levels (CSA helps to prevent GVHD)or too quick of a taper. So they have put Alex back on a higher dose of steroids with a plan to do a slower taper. He is also back on the TPN (they felt having good nutrition was important to healing the GVHD), since he had declined in his eating over the last several days. I know I had been telling the Docs the GVH was back since Sunday. Sometimes I think the Docs are more wishful thinkers than the parents. I also know that they really don't want to increase the steroids any more than is absolutely necessary because they further suppress the immune system and open Alex to the risk of infection.
I apologize if I have not kept up with many of you out there, returning phone calls, emails over the last several days. I promise I'll get there eventually. Watching Alex go backward on his symptoms was stressful and perhaps it is just the weariness, but my mind is getting fuzzy and it seems like it is harder for me to be organized and efficient.
Back home, John Wesley and Dennis have lost their support system. Dennis' sister, Barb, and her grandaughter, Keira, left today, returning home to Mechanicsburg, PA. They were a great help around the house, and Keira and John had a great time being playmates. We owe them one! I know father and son were planning to spend some quiet, quality time together tonight.
We are blessed.
Sharon and Alex
Tuesday, September 24, 2002 at 06:46 PM (CDT)
Day +91: Hoping Things Get Better
Yesterday was a very long day. We did our IV home infusions starting at 8:00am--at clinic at 10:00am for our Amphotericin and fluids--left clinic at 3:00pm--CT chest scan at 7:00pm--back at apartment at 8:30pm--IV home infusions again--visit by home health nurse at 10:45 to 11:30pm--and then finally to bed. Alex has not been feeling any better. His mucus is worse, yesterday and today he ran low fevers (100.6, 100.8) and now he says he feels some nausea. I hope tomorrow I can get them to pursue his symptoms more vigorously. They have mentioned they may want to do another GI scope and biopsy. Alex's CSA level was low again yesterday so we once again increased his dose. We will take another CSA level tomorrow morning. Because his CSA level has been low, I've personally wondered whether some of Alex's GVHD has reared its head. They've also put us on home IV fluids, with potassium and magnesium supplements, for 10 hours at night. That's why the nurse was at our apartment late last night. The fluids are to help with Alex's hemmoragic cystitus (a virus in his bladder), and to replace electrolytes he loses from the Amphotericin. We also found out yesterday that we would have to continue with one more week on induction therapy on the Ganciclovir (2 times/day). The normal induction therapy is 2 weeks, but we have to do 3 weeks because the one lesion in his mouth was determined to be CMV. We will follow the induction therapy with 6 weeks on once a day infusions Mon-Fri. The Ganciclovir affects Alex's counts. We've been fortunate his WBC has held up as long as it has. It's proof he has a good engraftment. I hope it can hold up a little longer. The good news is his CMV antigenemia test came back negative. His CT chest scan has also not changed any so they believe that there is no fungal infection, so perhaps we will be able to stop the Ampho soon.
Well, the weather has changed here! It's not just fall here, it's winter! We are looking forward to seeing the fall colors the cool weather will be sure to bring.
I want to thank all of you who continue to keep in touch with us (even if we don't get back right away) and keep us in your thoughts and prayers. It sure helps us on these days that seem to drag on.
We are blessed.
Sharon and Alex
Sunday, September 22, 2002 at 08:48 PM (CDT)
Day +89: Clinic Life
Our days since the last update have been centered around clinic. We have spent 3-4 hours there each day. On Friday Alex got Amphotericin B and his potassium. We also saw Dr. MacMillan and she said that the biopsy was "consistent, but not diagnostic" for Chronic GVHD. I'm still not sure exactly what that means. With chronic GVHD, they would normally give boosts of steroids, but that runs the risk of further supressing his immune system and activating his CMV. They want to get rid of the CMV and see if Alex's mouth and esophogus will improve under the steroid taper. If Alex's mouth does not improve, they may need to consider the steroid boosts. We also found out that Alex's CSA level was still low, so they put us back on IV CSA, which is delivered at home twice a day over a 2-hour period. What will I not be able to do when I leave here?!
Alex has also continued to have blood clots in his urine, which they said is viral and can come and go, called hemmoragic cystitis. There is nothing that can be done, but to assist with the symptoms and minimize the viral proliferation by taking in lots of fluids. So over the weekend, in addition to blood products, Alex also received fluids both days.
For some reason, Alex's mucous has increased over the last two days, including increased fatigue, and perhaps a little loss in appetite. I don't know what that means. The "fellow" on call today was not of help, and so I hope to raise the issue again tomorrow.
I know in my last entry I indicated that fall had arrived in Minneapolis. After today, I perhaps should have said winter had arrived. It was in the low 50's this morning when we went to clinic and windy. Alex said it was time for us to go shopping and buy some warmer clothes. I'm looking forward to seeing the fall colors though--something we don't really get in Shreveport.
We had a disappointment this weekend. We had anticipated the arrival of my Mom for a visit. She was unable to come because she developed a sore throat and cold at the last minute. I hope she feels better soon, and who knows maybe we can reschedule the visit for later.
Well, it's time for disconnecting Alex from his meds, and getting ready for a new week.
We are Blessed.
Sharon and Alex
Thursday, September 19, 2002 at 08:43 PM (CDT)
Day +86: Ups and Downs
Yesterday and today have been full of ups and downs. We got discharged from the hospital-up; Alex's liver enzymes and bilirubin went down-up; Lee left in the afternoon, returning to Austin-down; Alex's CSA (cyclosporin) level, since taking it orally, came back yesterday even lower(CSA prevents GVHD)-down; Alex ran a fever in clinic today of 102-down; they chose to give us an IV antibiotic and not readmit us-up; Alex's biopsy came back "inconclusive" on the lip for acute vs. chronic GVHD and as CMV (cytomegliavirus) on the cheek-up and down?; this afternoon Alex passed some blood and a blood clot in his urine-down; the doctor said not to worry and just to drink plenty of fluids-up; Alex's fever did not return (as of this writing)-up. As you can see nothing stays the same for long.
Tomorrow in clinic I hope to ask our doctor lots more questions about the above. Today we only saw the nurse practitioner. He also received his Amphotericin B today in clinic and will have to do so tomorrow. The draw back is that he has to take benedryl as a pre-med and so it kind of wipes him out for the day. Alex's mouth biopsy area is healing and doesn't seem to be bothering him as much. So today was a better day for eating. We've both taken naps yesterday and today. It was amazing how much we moved back to the apartment, getting everything put away, getting meds received and organized, etc. At least now if we have to go back in, we're well rested.
We're keeping our fingers crossed we stay on the outside. If so we're going to need to start preparing for cooler weather. Fall looks like it has arrived in Minneapolis.
We are blessed.
Sharon and Alex
Tuesday, September 17, 2002 at 10:16 PM (CDT)
Day +84: Another Tough Day!
Alex has once again had to endure a tough day. We had a tough night, too. We had several meds interupt our sleep last night, in preparation for going home, and platelets early this morning in preparation for the lip biopsy. On top of that we had a lousy night nurse with squeeky shoes, who left lights on, flushed toilets, etc. Alex's biopsy was this morning at 9:00am. They took not only a biopsy from the inside of his lower lip, but inside his right cheek, which was already pretty inflamed. As a result he has been in a lot of pain today, taking morphine and oxycodone. Alex hasn't eaten or drunk anything today, but has taken his meds as required without much complaint. The doctors gave Alex the choice of whether to stay in the hospital one more day, and he took it. We'll plan on a discharge tomorrow.
Lee leaves tomorrow afternoon. Her visit has been wonderful for Alex and helpful to me. Today she cleaned the apartment in preparation for Alex's return. She did get a chance to sit with Alex perched up on his hospital bed and watch Lord of the Rings. We'll sure miss her when she goes.
We are Blessed.
Sharon and Alex
Monday, September 16, 2002 at 08:27 PM (CDT)
Day +83: Discharge Scheduled
We have had some very good days. We've been out on passes Saturday, Sunday and Today. Much of our time out has been focused on food. Alex has enjoyed cooking dinner and eating out. Saturday, he and Lee made Tabasco Seared Hamburgers, and Sunday night we made Quiche. Tonight we took in an early dinner at Red Lobster (Alex was wanting seafood and the restaurant wasn't crowded). Today we also took a side trip to the historic Stoned Arch Bridge in downtown Minneapolis--a pedestrian bridge which crosses the Mississippi River. On Saturday Night, while Alex and Lee made dinner and spent the rest of the evening at the hospital, I had a wonderful night "off duty". The Ronald McDonald House had a dinner just for parents, that included hors d'oevres, drinks, a great meal, table cloths, candles, and flowers, and of course, good company. I had a great time. It was a special treat for many of us. The RMH has been such a wonderful support system for us--physically and emotionally.
Finally, tomorrow at 9:00am, Alex will have his lip biopsy done. I don't know how painful it will be-at the most a stitch or two. I also don't know how long it will take to get results on the acute vs chronic GVHD. The oral steroid paste appears to be helping Alex's mouth heal a little quicker, but the doctor did indicate that would be a slow process. Alex's liver enzymes were higher today, but the doctor did not seem overly concerned, feeling that they would settle out eventually. His CSA (cyclosporin) level was low after his switch to oral intake and they have upped his dose. Good news is his CMV antigenemia test which was 15, then 14, was 1 (out of 50,000 cells), so they feel he is responding to the Gancyclovir. We will finish one more week on the induction dose, and then move to the maintenance dose assuming it remains good. As a result, we should be able to be discharged late tomorrow or early Wednesday. WOO HOO!!!
Things are finally looking up for us. That's not true for everyone here. So as always,
We are blessed.
Sharon and Alex
Saturday, September 14, 2002 at 11:41 AM (CDT)
Day +81: Day Pass
Alex's liver enzyme functions are improving, bilirubin steady. Alex was moved to oral CSA (cyclosporin) and to an oral antibiotic. This gave us even more time "off the pole" and a step closer to being discharged. As a result yesterday we were given a day pass to go back to Ronald McDonald house for a few hours and will be able to do so again today. Alex really enjoyed being out, and insisted on going to the grocery store, but I just wouldn't let him, and then helped me cook dinner when I got back. Alex ate real well yesterday. He had Fish & Chips from Sally's, a local restaurant nearby, and some mozzarello cheesesticks. For dinner we made a shrimp and pasta dinner at the house, and he ate a LOT. He's been having a hard time finding meats that he can eat that aren't too dry or chewy. The shrimp has just the right texture.
Today, our attending doctor changed. They change every 2 weeks. Dr. Wagner is now on the floor. He is the doctor who built the FA BMT Program here and the protocol that was used on Alex. They're still trying to get Alex's lip biopsy scheduled for Monday, to determine if Alex's GVHD is chronic versus acute. They want to do the test because his mouth/throat sores and GVHD is somewhat unique in its presentation and have been around a long time now. He said if it is chronic they would simply administer the steroids a little differently. He is also starting Alex on an oral steroid paste. Right now he is using one that he swishes and spits with. The paste should last longer with the hope of providing faster healing.
The doctor implied we might get out next week if certain things happen. First, Alex's CSA level will need to be sufficient--having switched to oral intake. And then, his CMV antigenemia test will need to show that it is responding to the Gancyclovir. If not, they will need to try a new drug, which they will want to administer inpatient for the first couple of doses. But assuming nothing else arises, at the maximum, we should be out of here in a week. That calls for another WOO HOO!
Lee's visit has been great so far--lots of laughing. She's also helped me out--cleaning the bathroom, doorknobs, handles, and other surfaces so Alex coutld visit the apartment and also helping with dinner. She's a great gal!
We are blessed.
Sharon and Alex
Thursday, September 12, 2002 at 10:46 PM (CDT)
Day +79: Lee Arrives
Alex spent the afternoon enjoying his sister's company, laughing at cartoon websites, playing chess, watching TV, and making "amazing boxes" (we learned today how to make gift boxes out of greeting cards as part of a BMT support activity). The group (mostly adults) who gathered had a good time. Tonight Lee is going to stay over at the hospital with Alex giving me a break and hopefully a good nights sleep.
Good news. Alex's liver enzymes went down for the first time. They think it is probably due to removal of the TPN. We hope it continues in that direction. The only thing else going on medically right now--the doctors want to do a biopsy of his mouth. They are trying to determine if whats going on his mouth might be chronic GVHD. I don't know exactly what that would mean. I am working real hard not to worry about things before I need to. I find you get better information out of the docs when they're dealing with a definitive diagnosis. The biopsy will be done by an oral surgeon either tomorrow or early next week. In the meantime we keep eating, keep active, and wait.
Back home, Darlene (Dennis' sister) and Andy have left Shreveport and returned to Pennsylvania. Following their departure, is the arrival this evening of Barbara (Dennis' other sister) and her granddaughter, Keira. Keira is John Wesley's age and they always have a good time playing together. I want to thank our family once again for helping us out.
We are blessed.
Sharon and Alex
Wednesday, September 11, 2002 at 09:36 PM (CDT)
Day +78: Liver Biopsy Cancelled!
The doctors brought a smile to Alex's face today. They came in and told him his liver biopsy was cancelled. Now he can truly enjoy his sister Lee's arrival tomorrow. They cancelled the biopsy because one of his stool cultures grew a virus which can cause elevated liver enzymes so they are going to give him a few more days to see if they improve. A biopsy is still a possibility down the road. At the same time they said that they did not think it was GVHD because his bilirubin while elevated, is stable, and would typically rise it it was GVHD.
Alex's CMV antigenemia test came back positive again, down only from 15 out of 40,000 cells to 14. Since it did not go up the infectious disease doctor wants to keep him on the gancyclovir. If he still hasn't responded by next week, they may change to another therapy. We would have preferred for the CMV to go away, but they feel with these early warning tests they can usually prevent a CMV infection from occurring. Alex also started on a new antifungal drug today--Amphotericin B, because he simply needs to be on one as a preventive measure, and Ampho won't interfere with his liver enzymes. We had been worried about the side effects, but Alex got through the transfusion smoothly with tylenol and benedryl.
I told you Alex has been working hard at his eating. Well he did it! He's off the TPN--no NG Tube, Woo Hoo!
Reflecting on 9/11, I am reminded of the outpouring of generosity of individuals across our nation in light of this tragedy. In particular, the many who donated blood. Alex and the other children here have benefited by the similar generosity of unnamed individuals. In remembrance, for those of you who are able, please consider giving "the gift of life".
We are blessed.
Sharon and Alex
Tuesday, September 10, 2002 at 09:18 PM (CDT)
Day +77: That Dang Liver!
Alex, from his mom's perspective,is doing just great. He is working very hard at eating (the threat of a NG or NJ tube is a real motivator). Unfortunately his liver is not cooperating. As a result they are trying to get Alex off the TPN ASAP. Today they removed the lipids hoping to increase his appetite. If he can eat enough over the next two days, they will forego the tube for supplementary feedings. They have also scheduled a liver biopsy for Thursday, so they can better determine what is or is not going on with his liver. Yesterday he had a chest and GI CT Scan again and both his chest and liver,in particular, look good. Both the BMT docs and GI docs do not believe it looks like GVHD in the liver- but I've heard that one before. So, while I'm sure Alex isn't crazy about the procedure, I will feel better if we can get a diagnosis. Alex also had a metabolic test run today, no results yet. Apparently there is a possibility the elevated liver functions could be caused by over feeding (Alex and the concept of over feeding just don't seem to go together!). We'll know more tomorrow.
Tomorrow, Alex gets his IV IG (immune globulin--an antibody, used as part of his CMV therapy) again and Amphotericin B. The staff is working with me to schedule those where it doesn't interfere with his activity during the day. I want to keep him eating, doing schoolwork and being active as much as I can. So, I've even been trying to get his IV meds rearranged so he can be disconnected from his IV pole as much as possible. I think I'm finally understanding how things are done and how to ask for what I want. I wish I knew more going in, but better late than never. Everyone is accomodating, they're just having to think a little harder.
As I said, Alex and I have been enjoying our time together. We've gone outside a few times, and swung on one of the gliders in the courtyard. I make him do all the pushing as part of his physical therapy. We also went shopping in the gift shop--and he found something he has been desiring for weeks, a back scratcher. I am now instructed to wake him up in the mornings by scratching his back. Late last night we both climbed up on his hospital bed and watched a good movie. It was nice to give ourselves permission to stay up late (12:30am) even though we knew the nurses would be waking us up early.
Another simple pleasure--our "neighbor" on the unit, who has a 16 year old boy, made Alex a baseball-themed cotton blanket, or throw. It is very comfortable and has been so nice for him to throw over his lap when he sits and does homework, computer work, etc. It sure beats the rough hospital blankets. It was so nice for her to do that.
We are blessed.
Sharon and Alex
Sunday, September 08, 2002 at 04:18 PM (CDT)
Day +75: No Complaints
Alex and I are both sitting here watching the U.S. Open and playing on our computers. With our move, kids could request new computers to be placed in their room which are directly connected to the hospital's network. Our phone line should actually be open occasionally now! We have had several good days in a row. Alex has been his old self--working with his Magic cards, fantasy baseball, laughing and making jokes. He's also been doing everything he's supposed to be doing--walking, eating, taking his medications, doing school work. Today, we even took a stroll outside, without the IV pole! So life feels good.
The last two days they have started to cycle his TPN (IV nutrition). That means, rather than being on the TPN 24 hrs a day, he's on it for a shorter period--last night for 16 hrs, tonight for 14 hrs. I guess this is because he has started eating and it helps to better stimulate his appetite when his body isn't being fed all day long. Alex's food choices have not changed much because his mouth and throat are still tender. We're sticking mostly with the pasta food group--macaroni, spaghetti, cup-o-noodles, etc. I hope he doesn't get too bored with these choices. He takes a "Magic Mouthwash", with lanacaine, before he eats. Life will feel normal when his mouth and throat heal.
They really want him using his GI Tract as much as possible to heal the GVHD, relieve stress on the liver, etc. Alex's bilirubin is still up and now his liver enzymes once again. Since his anti-fungal can directly affect his enzymes they have removed that medication. Because he is immune suppressed, they will have to put him back on one soon, but the only choice left, Amphotericin B, has some bad side affects while being administered such as the rigors. They said they can pre-medicate him to prevent that though. They will not make a decision on exactly what to do until after his CT Scan (Chest and GI Tract) on Monday. Today they did an ultrasound of his liver, to be cautious, and fortunately that came back normal.
Alex has been "puffy" off and on the last two days. Some of that is from the steroids, but it also from fluid retention. They have given him diuretics to deal with it. We have had some laughs--he admits he looks kinda funny. We laugh about trying to find his eyes. And we have somgood news, Alex has not needed any insulin over the last 3 days. Once less thing to deal with. Yesterday Alex did have to receive red blood cells. They have regularly diminished each day since his last tranfusion. They had previously thought Alex was "hemolizing" his RBC's- where the body eats them up--but they think that was due to the GVHD, and that it is improving because his retic count (production rate of new RBC's) has fallen from 7.0 to 3.7.
I was fortunate on Friday to participate with the Louisiana American Planning Association on the Award's Committee, reading submittals and selecting award recepients for this year's conference. It was enjoyable amongst this somewhat isolated life to do something professionally. I'm glad they let me participate in this limited way.
Alex and I have lots of visitors ahead. We're really looking forward to that. Lee arrives on the September 12, my mom on Sept. 21, Jenny, a good friend, on the 30th and the Dennis and John will be arriving on Oct. 5. We are so lucky, I'm almost giddy!
Once again thank y'all for your support. We long to be home.
We are blessed.
Sharon and Alex
Thursday, September 05, 2002 at 07:42 PM (CDT)
Day +72: A Room With A View
Alex and I just love our new room. We moved late this afternoon. We have a good amount of space, which helps when maneuvering IV poles around and bed trays, etc. We also have a window. It has been raining this afternoon, and both of us have enjoyed watching the storm. And Alex is looking forward to his shower this evening in his private bathroom.
It has been a great day for Alex--I'd say his best in over a month. He did his homework this morning without being asked. He had a good physical therapy workout, was on the computer for about 4 hours and is still playing with his Magic cards. And while he has not eaten much he has tried hard. We got a little chocolate milk in him and some macaroni and cheese.
Medically, not much has changed. His bilirubin went up but the doctors seem ok watching that for now. They were more concerned about his liver enzymes which have come down since they stopped the voriconazole (anti-fungal). They are down low enough now that they are going to restart it. The doctor was going to back off the "G", or gastrointestinal tube for now to give Alex a break from the procedure. She will probably raise the issue again next week and determine what she wants to do. We also finally found out today that Alex is still 100% donor cells in his marrow. We had not doubted that since his counts have been strong and because of the GVHD-- but it's still nice to hear.
I asked the doctor to look into her crystal ball and tell us if she thought we would be here (in MN, not the hospital)past day 100. I already knew the answer, but we wanted to begin making some definite family plans. She confirmed we would probably be here a bit longer. The important thing is for Alex to get well and to get past these hurdles. The number of days spent here is unimportant. And Alex is doing everything he can to get there!
We are blessed.
Sharon and Alex
(The new room and phone number is posted on the web page.)
Wednesday, September 04, 2002 at 08:38 PM (CDT)
Day +71: Billirubin Down
The good news is that Alex's billirubin was down today. We'd love to see that trend continue. As a result the doctors are going to wait on a liver biopsy. It may be down due to a new medication, Actigall, Alex started yesterday, which is supposed to activate the gall bladder in processing the billirubin.
The doctors also wanted to put Alex on an NG tube, which is a tube inserted through the nose down to the stomach. The purpose is to give him some of his nutrition through the tube to get his GI tract working again, which they say will heal the GVHD in his intestinal tract. It would also reduce the amount of TPN he receives and thus the stress on his liver. Well, once again they traumatized Alex. They tried to get the tube down, but he just couldn't stop his gag reflex and eventually coughed it up. I don't blame him after the previous failed attempts. They may have another option, and I'm sure we'll discuss it with the doctors in the morning.
Alex had another good physical therapy workout. The teacher came by again too. So, we're covering all the fronts to get Alex back home to resume his regular life.
Tomorrow is moving day. We're the experienced ones, we've done it before. We are so looking forward to a private bathroom with a shower and door, and A WINDOW. I'll post the new room and phone number on the front page tomorrow.
Gene leaves in the morning. Alex said goodbye to him tonight. It was so nice to have him here. I know Alex enjoyed his visit and it really allowed me to get out, get some rest, run some errands, and visit with friends. In fact, I met a new friend today. I had lunch with Amy, a mother of a 14-year old girl with FA, who lives in St. Paul. She was nice enough to reach out to me, and after several emails we were finally able to meet each other face to face. I hope we get a chance to get together again. The friendships this experience has provided are such a blessing.
Well, tomorrow will be a busy day, so I better sign off. I was never one for brevity. I wish I could better express myself in fewer words. Gene's entries were so good at that. Thanks, Gene, for all your help.
We are blessed.
Sharon and Alex
Tuesday, September 03, 2002 at 09:15 PM (CDT)
It's Gene again - Sharon's sabbatical from the laptop ends tomorrow, since I'll be going back to S'port early Thurs. a.m.
Today has been a mixed bag.
The bummer part is news that his CMV - cytomegalovirus - has reappeared. Along with it, Alex's bilirubin counts (liver function measurement) were quite a bit higher the past two times, and his jaundice is more noticeable.
GI and contagious disease doctors are consulting with Alex's bone marrow transplant doctors, and everyone is monitoring events closely. Some of his medications are being stepped up, and more tests may be in store, including a liver biopsy. We will hear more on this tomorrow.
Mouth sores are about the same. Alex began topical steriods and anesthetics for these today, witht the goal of getting the pain down to where he can eat.
The good news is: Alex's energy level is the best since I've been here - he's been doing schoolwork; had a great PT session playing soccer in the hall with the therapist (while I maneuvered the IV stand and tended the lines); and he stayed on the internet enough today to make the laptop into a bedwarmer.
Stay tuned.
Gene
Monday, September 02, 2002 at 07:02 PM (CDT)
Its Gene here. Sharon is on break for the night.
Alex is holding his own. His mouth sores are about the same, he says. The pain keeps him from eating. Getting his nutrition through an IV bypasses his GI system. But he is drinking Power Ade to help crank up his digestive system.
Yesterday his glucose levels were bouncing around, (caused by the steroid medications) and Alex was feeling poorly as a result. Today his insulin has been adjusted to the point where the changes are much smaller, and he is feeling better.
The best news is day 4 without fever. He has been taken off one of his antibiotics as a result. With just a few more medications gone, he will be down into the single digits. (Really)
A physical therapist was in to start Alex back on an exercise regimen today. He also did a lap around the wing to work on the legs.
When I asked him what the best and the worst of all this was for him he responded:
The worst - "All the people bugging me"
The best - "getting out of here."
Absolutely.
Keep your sign-in emails coming. They get read and are a great lift.
Gene
Monday, September 02, 2002 at 07:02 PM (CDT)
Its Gene here. Sharon is on break for the night.
Alex is holding his own. His mouth sores are about the same, he says. The pain keeps him from eating. Getting his nutrition through an IV bypasses his GI system. But he is drinking Power Ade to help crank up his digestive system.
Yesterday his glucose levels were bouncing around, (caused by the steroid medications) and Alex was feeling poorly as a result. Today his insulin has been adjusted to the point where the changes are much smaller, and he is feeling better.
The best news is day 4 without fever. He has been taken off one of his antibiotics as a result. With just a few more medications gone, he will be down into the single digits. (Really)
A physical therapist was in to start Alex back on an exercise regimen today. He also did a lap around the wing to work on the legs.
When I asked him what the best and the worst of all this was for him he responded:
The worst - "All the people bugging me"
The best - "getting out of here."
Absolutely.
Keep your sign-in emails coming. They get read and are a great lift.
Gene
Sunday, September 01, 2002 at 06:43 PM (CDT)
Day +68: The Waiting Game
Alex is still on the steroids for the GVHD- Graft versus Host Disease. The good news is that Alex's fevers have gone away for 72+ hours now, his mouth has had only minor improvement, but his skin seems to be a little better. By the way, I believe we failed to mention that Alex's skin biopsy came back GVHD too. Really, all we do now is wait and see how Alex responds.
The doctors want Alex to start eating if he can and to remain active. The eating is hard because food and liquids burn his tongue. Moving him away from 24 hour TPN will help with his glucose/insulin problem and elevated billirubin levels. Sometimes you can tell whether his billirubin has gone up or done just by looking at the whites of his eyes.
I had a wonderful morning. Pam and her husband, Carl, picked me up and drove me around Lake Minnetonka, and then took me to a brunch at a lakeside restaurant. We had wonderful food, conversation, and an outdoor lakeside setting. It was so nice to go beyond this hospital campus--and get away, relax, have fun. So big thanks are in order to Pam and Carl for being so kind and generous. They are truly great people. Thanks are also in order to Gene, because if he were not here helping out, I could not have gotten away.
We have a change in shifts down in Shreveport. Dennis' sister, Darlene and her husband, Andy, arrived to help out on the homefront. So far, it sounds like things are going well and that there is lots of pool time going on. In fact, John told me today that he swam from one side of the pool to the other (lengthwise) without his floaties. I am so impressed! We are so fortunate to have our family helping us out through this time.
Another FA family moved on to the unit Friday. It was nice to meet the Vangels. They have such a lovely daughter. We had emailed each other several times previously, so it was nice to feel like there were friends arriving on the floor. Please keep Amy in your prayers as they begin their journey. The families here are such great people! I'd also like to take a moment to ask for your special prayers for two families who have gone through very difficult times recently.
Well, I'll close by saying Happy Labor Day! The U of M campus is like a beehive with the return of students this weekend.
We are blessed.
Sharon and Alex
Saturday, August 31, 2002 at 09:25 AM (CDT)
Its Sat am and Alex is starting to stir.
He had an uneventful night, resting well.
This is Gene, Alex's dad. I got in yesterday afternoon, and will be here through Wednesday next week. Sharon got the night off, and is getting some r and r at RMcDonald house.
No particular change in Alex's numbers. Its a short time since he started on treatment for the GVHD, and we will be looking for responses hopefully soon.
Alex has some company lined for the next few weeks.
Lee is coming back for a second run Sept 12 - 18th, and Grandma will follow (for her second visit, as well) the 21st - 27th.
Hopefully it won't make a difference, but the Hospital is playing patient musical chairs again, and if Alex is still inpatient late next week, he will get to revisit his old stomping grounds in 4A next week. Which would be good, since the new room would have a newer tv and vcr, would be larger, have a window, and shower. But by that time, we want to have Alex and Co. back at RMcDonald house. By the way - The next time anyone who reads this goes to McDonalds, look for the RMcDonald House donation jar and take all your change in your pocket and purse, go out to the car and get all the change in your ash tray and put all of it in the jar. We think RMcDonald house is great. Its a wonderful support system for families dealing with childrens medical problems.
I thought Alex would be up by now and could add to or edit this. But deadline's approaching, so he loses his chance.
Gene
Thursday, August 29, 2002 at 10:09 PM (CDT)
Day +65: GVHD
This entry is going to be brief because it is late and the interrupted nights are catching up with me. I spoke today with Alex's primary physician, Dr. MacMillan. She confirmed that the pathology reports confirmed that all the biopsies were shown to be GVHD. She said Alex's GVHD is very treatable, and that we should expect to see improvement within a week. They will not discharge us again until they see some improvement. I know Alex has spoken more words this afternoon than he has in a week, so who knows maybe, just maybe, we're already making progress. They decided to do a skin biopsy to determine if Alex's rash is GVHD. It's not typical, just like his GI condition. They took the biopsy from his abdomen, took a "punch" of skin from the surface, requiring 2 sutures. Alex didn't complain and watched the whole thing. He's quite the trooper. Alex has a few other complications, but all in some way stemming from the core problem of the GVHD.
I know in a past entry I discussed what GVHD was. Tomorrow I'll pick up my resources and see if I can once again provide more info to explain what it is. But basically, GVHD is when the donor's cells attack the host's cells (or Alex).
Good news--Gene, Alex's father, called this afternoon and said he was flying up tomorrow and would be here through Thursday. This will be good for Alex-- and for me, too!
We are blessed.
Sharon and Alex
Wednesday, August 28, 2002 at 05:10 PM (CDT)
Day +64: A Diagnosis (They Think)
The last two days we have had a lot of conversation with doctors both before and after his bone marrow biopsy and GI Scope, and too many speculations to even discuss, so I won't. We just received word on the biopsies, and the diagnosis is that it is GVHD. They are "confident" it is GVHD, but are not 100% certain. Alex's symptoms are somewhat unique for GVHD. His lesions were primarily in his upper esophogus, with few in his stomach, which is not consistent with GVHD. His "goosebump" type rash is also not typical. They are going to start Alex on intraveneous methylprednisone (a steroid) to make sure he is absorbing it and will later switch to oral if they can. They don't believe their is any reason he shouldn't respond to the therapy with hopes this will improve his mouth/throat lesions and mucuous, his rash, and fevers. The only reason for concern would be if he didn't respond to the therapy. However, the doctor also said they might have to rethink the diagnosis if there is no change.
We did have a little excitement during Alex's procedure. They decided to intubate him for the procedure--sticking a tube down his throat to keep his air passage clear and to provide him with oxygen. They wanted to do this because they were concerned the mucuous might interfere with his ability to breath. Well, when he was waking up out of the procedure they removed the tube a little too soon, before he was able to breath on his own, and had to manually pump air in to him. Alex remembered all this, the panic he felt when he couldn't breath, and that it felt "really good" when they put the mask on his face and pumped the air in. Of course, I was out in the hallway, they had just told me I could go in as soon as they removed the tube. The next thing I know, I hear them call for the respiratory therapist "stat", and then I see her run by me into Alex's room. Of course, my heart fell into my stomach when that happened, but the crises was over soon. And to Alex's benefit, the doctor's were "impressed" by the swelling and lesions he had in his throat and esophogus--so much so that the GI doc had a little difficulty getting the scope in. So I think Alex received a little more compassion over what he had been enduring over the last couple of weeks. Alex's throat was not unexpectedly sore from being intubated. Even with the discomfort he took his oral meds without complaint.
Other things that have happened:
Alex is now on 24 hour TPN (IV nutrition) because his glucose levels were erratic. With the 24 hr TPN his carbohydrate intake is consistent, and therefore, his insulin can be given consistently to keep his glucose consistent. So far that has done the trick.
Alex is now taking oral Vancomycin. The oral Vanco is not absorbed by the body, so there are none of the side effects experienced with the IV Vanco. As a result the Vanco sits in the lower GI, which is what is needed to treat the clostridium dificile--which he got the last time we were hospitalized and has not gone away with him taking the Flagyl. The infectious disease doctor had to approve this, because Vanco is one of the "last" resistant antibiotics and they want to keep it that way by eliminating its overuse.
Alex's CT Scans were good, and the lungs look evern better than the last two scans. Alex's last CMV antigenemia test was negative. His CSA level is now good (CSA helps prevent GVHD). His billirubin and liver enzymes are down, which is good.
Alex's counts are down from the weekend, but that is due to the Ganciclovir, which he now takes M-F. So we may continue to see some stair stepping, with counts increasing on weekends, decreasing during the week. Either way, so far we have not had to have the transfusions we anticipated.
Alex has been in a better mood today, and had more energy. I think yesterday's procedure gave him a bit of a jolt and reoriented him. I actually got him to take a walk in the hallways. I know he is tired of seeing doctors and nurses all day long and in particular having them listen to his heart, lungs and look in his mouth. He probably has this done 7-8 times every day. I hope his improved mood is not short lived. Starting the steroids may return us to the days when we were on the Adult BMT unit, having problems with the night nurses, and treating Mom as an enemy. I'm hoping we learned from the last episode and will have better coping skills this time around.
I'm slowly meeting other families on the unit with us. It brings me joy each day to see some kids improving and getting closer to being discharged and sadness and, yet fortitude, to see others continue with their daily struggles. And so,
We are blessed.
Sharon and Alex
Monday, August 26, 2002 at 03:22 PM (CDT)
Day +62: We're Not Having Fun--Yet
Yesterday was a rough day for Alex. It started off with fever and several boughts of diahrrea. That was followed by him receiving an IV of Immune Globulin, an antibody that if not at sufficient levels, is given to those under treatment for CMV. The IG helps to fight infection. Most patients have a reaction to IG so they pre-medicated Alex with Tylenol and benedryl. He still reacted to it so they stopped the medication, gave his some Demarol, started it back up, reacted again, more Demarol and then finally some Hydrocortisone and much longer infusion time. His reactions were what's called the "rigors", or cold shivers, shaking and muscle aches similar to a high temp. It was not at all pleasant. They also had to take his BP every 15 minutes and keep a close eye on him. The afternoon Alex spent sleeping, from the combo of the bendryl and the Demarol. And little did he know the worst was yet to come. The doctor decided he wanted another GI, chest and sinus CT Scan. Somehow the resident believed it was essential that he have the oral contrast for the GI scan in order to get a decent reading. The oral contrast requires you to take down at least 16-24 oz. which of course Alex could not do. So they decided they would give him a G-Tube and give him the oral contrast through the G-Tube. Well, they tried inserting it 5 times, each time causing Alex more nose and throat pain--and trauma. They even gave him some morphine he was in such discomfort, but they still couldn't manage to get it in place. We went ahead and did the CT Scan. As of this afternoon, we still do not know the results.
Other developments of concern:
His cyclosporin level, which prevents GVHD, was even lower yesterday, even though we had increased his dose last Wednesday. They think due to the diarrhea that he was not absorbing it. They are now giving it to him by IV, and will take a new reading tomorrow.
His Glucose level was high this morning, was even higher at noon, and we are awaiting the results of a new reading from this afternoon. He may once again have to go on insulin.
His weight has fallen along with his nutrition parameters. So rather than putting him on TPN over 12 hours, they are going to up it to 16 hours to get more carbs in.
His bilirubin level is up; the whites of his eyes are a little yellow too. The doctor is not overly concerned right now. He said it is often elevated at this point of transplant and that he will be keeping an eye on it.
Alex had a little bit of a skin rash today. It sort of looked like permanent "goosebumps". We're hoping it is a reaction to the Vancomycin and not GVHD. GVHD is of course a concern because his CSA Level has been so low. They gave him a new drug besides bendryl, I don't remember the name, to stop his itching. Because he had stopped running fever, they are removing him from the Vanco and putting him on another antibiotic, so they can remove Vanco from the picture as a cause of the rash. We'll just have to wait and see if it goes away.
The good news:
Alex has not had any fever since 1:00pm yesterday or any diarrhea since yesterday morning.
Alex's counts are good. His WBC is up to 6.3, ANC is 5.2, Hmg is 8.8, and Platelets 103K. I didn't ask if his WBC and ANC jumped because he did not receive any Gancyclovir on Sat and Sun. He now only gets the Gacyclovir on M-F. Either way, any growth is good, even if it declines during the week, at least it will be "declining" from a higher starting point.
Alex gets his bone marrow biopsy tomorrow at 1:00pm, at which time a Pediatric GI doctor will do a scope (including a scraping and possible biopsy of anything they see) and an ENT doctor will also take a look at what's going on. So it seems they are trying everything they can to determine what is causing his mouth, throat infection and secretions.
Lee, Alex's big sister called today and said she would be returning for a visit on Sept. 12-18. This will give Alex something to look forward to. THANK YOU LEE!
I know I have been running on and on. I'm thankful we're here and that the team is working hard to help Alex out. Perhaps by Wednesday we'll have some answers.
We are blessed.
Sharon and Alex
Saturday, August 24, 2002 at 08:03 PM (CDT)
Day +60: To the Hospital--Again!
There was nothing much unusual about yesterday. Our day started off slowly. I had a delightful lunch with Pam in the RMH dining room, and then Alex and I went to see the Austin Powers movie. The theme may be getting old, but we sure do love Dr. Evil. Alex and I even played some "Speed" last night (a card game) and watched the new detective show "MONK". Alex likes this new series.
In the middle of the night and early this morning Alex had a little diarrhea. He also ran a temp this morning of 101.0. Which of course means we were off first to clinic and then to the hospital. Alex was sure disappointed at having to come back in again. It's been a frustrating time for us to never get fully used to being "free". They have done the usual cultures, started the antibiotics and fluids. Alex had more of a reaction to the Vancomycin this time--extreme itching--so next time we are going to have to premed him with benedryl.
I'm hoping since we're back in we can get a little more attention given to his mouth and throat yeast-fungal infection. The doctor we saw today said he was going to have his bone marrow biopsy and Upper GI Scope moved up from Thursday to Tuesday. He also mentioned that they may need to try a new anti-fungal, since the one he is on has not made a difference. If we can solve this mucuous issue for Alex it would dramatically improve his quality of life. His mouth tastes bad, he doesn't want to talk, or eat or drink because of it, and its been going on now for almost 2 weeks. It is adding to his depression. I'm hoping I can entice some visitors up here soon to help out with his mental status.
While this is hard, Alex and I keep trying to remind ourselves that many have been through worse complications and everything in the end has worked out just fine. I'm trying to balance getting the medical attention necessary to resolve Alex's symptoms, but at the same time trying not to panic and taking it a day at a time. It is easier to do knowing how many of you are out there rooting for us. So thank you and know that it does make a difference to us.
I want to take a moment and particularly thank Larry and Nancy Lower, Dennis' brother and sister-in-law. They just spent 2 weeks in Shreveport helping Dennis out and taking wonderful care of John. John of course did not want to see them go!
We are blessed.
Sharon and Alex
Thursday, August 22, 2002 at 09:51 PM (CDT)
Day +58: Clinic
Today, of course, revolved around our clinic visit. Clinic always starts with a "weighing in", vitals, labs, exam and consult with the doctor, including lab results. Alex's blood pressure was low when we arrived, but he didn't have any symptoms. A reading later in the visit showed it back in the normal range. His oral temp was a little high, 100.3. Because of his mouth sores, I asked them to take a second reading under the arm. That reading came back with a reading of 99.6--better.
Alex's counts are still good and holding. In fact, his platelets are up to 107K. The doctor said his other counts are holding and if it weren't for the ganciclovir, they would be much higher. I believe her "lay term" was that he had strong marrow. Are those good words or what!
They believe Alex's mouth problems are either do to yeast or a fungal infection. They believe he is well covered by the Bactrim, the Nystatin and Voriconazole. However, they still want to find out was is going on, so they went ahead and scheduled the GI scope. Next Thursday, Alex is scheduled for his 60-day bone marrow biopsy, which will be followed by the GI Scope. They thought they would do it while he was already under sedation for the biopsy. We'll meet next Wednesday with the Pediatric GI Doc.
I hope it ends up that Alex's mouth and throat are healed by Thursday, and that the scope procedure is perfunctory! You can't keep me from hoping!
We are blessed.
Sharon and Alex
Wednesday, August 21, 2002 at 07:17 PM (CDT)
Day +57: New Friends
We've had a good couple of days. On Tuesday, we went and saw the movie, Signs. It was scary, but very distracting--which is just what we needed. Today, we went to a "Gold Country" store to finally buy us some University of Minnesota wear, and then we took another drive along the Mississippi. I swear we saw trees that were just beginning to have their leaves turn. I'm sure our new sweatshirts will come in handy before we leave.
Due to Dennis' insistence, I called and found out our labs from Monday. Alex's counts are still good: WBC- 3.8, ANC- 2.8, Hmg- 9.4, and Platetlets- 71K. It's nice that it has been so long since we needed to get any blood product. Our cyclosporin level was low so they increased our dosage. This is not unusual. They often change the dosage to make sure it stays within levels so that it is not too low or too high. We go to clinic tomorrow. We'll see then if they decide to do anything about Alex's mucuous. Alex says it is a "little" better. All I know is he still doesn't want to eat or drink and goes through tissues like crazy.
I've had a good time being back at the house. It has given me more time to visit with other families here. They are a good source of support and in deed are "new friends". Pam's also coming by the house on Friday and another mother of a FA child from St. Paul contacted me and is coming by next week. It is such a gift to have new friends entering my/our life at this time. For Alex though, I need to see if we can arrange additional visits from family or friends. He needs more than me and our occassional activities to add interest to his day, to enliven him, and pull him into the future.
We are blessed.
Sharon and Alex
Monday, August 19, 2002 at 08:52 PM (CDT)
Day +55: Wanting Change
Same-o, same-o here. Alex is still having problems with all his mucuous, is still not eating anything and is not drinking anything. We went to clinic today. We spent most of the time trying to get his lines cleared so they could draw his labs. Alex seems to have semi-regular problems with developing what is called a "fibron-sheath" in his lines which allows fluids to be transfused, but prevents blood from being drawn out of the lines. So after several failed attempts with saline flushes, they ordered the TPA, a drug which clears the line. We then waited an hour for the TPA to work. They drew the labs, but we didn't wait around for the results, assuming they would call if there was anything out of the norm.
Dr. MacMillan was sympathetic to what Alex is going through. She told me not to worry about him eating or drinking until we get the mucuous cleared up. She told us to stop the Robinul since it was not helping with the mucuous. And, she said if there was no improvement by the time of our appointment on Thursday, that she may call in a GI doctor and have them put a scope down his throat to see what was happening. I'm just thankful they're trying to address the problem. Dr. MacMillan tried to assure us that still all in all, Alex is doing great in terms of the transplant and was pleased Alex was holding his own (blood counts) on the Ganciclovir.
We have tomorrow off. I think we're going to try to take in a movie. I'll have to say I'm a little nervous. I know it is not rational, but both times after we did an outing we went into the hospital. Tomorrow we break the trend!
We are blessed.
Sharon and Alex
Sunday, August 18, 2002 at 08:54 PM (CDT)
Day +54: Hairless
In many respects Alex's health status is the same. He still has mucuous being generated and he is not eating or drinking. His body is continuing to change from the radiation and chemo. He has just recently started to lose his eyebrows and eyelashes--hairless! I see it as just another Kodak moment. His skin is peeling all over too. He looks like he is losing an old summer tan--splotches of brown, and splotches of new skin. We keep wondering if his new hair when it grows in will be any different.
We spent a good part of the weekend hanging out in our apartment/room. Alex, since he has to spit so much is not comfortable going out in public right now. Alex did restart work on his Health unit. We also went for drives yesterday and today--yesterday around the downtown riverfront and Nicollet Island, and today around Lake Harriet, Lake Calhoun and Lake of the Isles. Minneapolis has done an excellent job with its linear park system. It was a beautiful day today and everyone was out walking, jogging, biking, roller blading, canoeing. I tried to get Alex out of the car--to go sit under a tree, play cards and enjoy the out of doors but he wouldn't do it. We'll keep trying! We enjoyed our sightseeing. I continue to like what I see here.
We have clinic in the morning, seeing Dr. MacMillan. Tomorrow is also our last day to do the Ganciclovir 2 times a day. Beginning Tuesday we'll only have to do it once. Between the two infusions and the TPN, I have been preparing 10 syringes daily. But now Alex likes to be the one to flush his lines! I like that. It makes me feel like we're more of a team.
We are blessed.
Sharon and Alex
Friday, August 16, 2002 at 10:28 PM (CDT)
Day +52: Home Again!
We were discharged late yesterday afternoon. I think Alex would have preferred to stay in the hospital, so he'd have access to the yanker and a means to get rid of his mucuous. They wouldn't have it. I have a feeling we needed to leave for insurance reasons. I was fine with leaving--I was looking forward to a night of uninterrupted sleep!
Pam came and sat with Alex for a few hours before we were discharged, so I could clean the apartment. I hadn't had a chance to touch the bathroom since Dennis and John's visit. Pam has been such a help when I have needed it. Our afternoon and evening was spent unpacking, waiting for our new medications to be delivered, learning from the home health care agency how to do the IV ganciclovir, and because of an error, waiting until 10:30 pm for Alex's TPN to arrive. So, by the end of the evening we were pooped. That fatigue continued through today. I think the 1 1/2 weeks in the hospital finally caught up with me. I got a good nap in today.
We went to clinic first thing this morning. A couple of good things came out of that. The doctor's in the hospital never seemed to relate to Alex's discomfort from his mouth and his mucuous. They kept thinking if they could give him "magic mouthwash" he could take his meds and it would be okay. The nurse practitioner we saw at clinic, Amy, finally understood that Alex's mucuous was at the center of his problems--his nausea, his lack of appetite, and throat pain (because of the "wretching"). She gave us a prescription to help clear that up. He only started it late this afternoon, and Alex says there is some improvement. I hope it improves--I'd love to see him eat and drink again. The other good news is that his counts are doing great, especially given that he is on the ganciclovir. His WBC today was 4.3, his ANC 2.7, his Hemoglobin 9.9, and his platelets 67K.
Now our challenges are for Alex to start eating again, to gain his strength back, and begin doing some school work. And if the next few days go well, we can start "getting out again".
Thanks for all the kind words of support during our hospital stay.
We are blessed.
Sharon and Alex
Wednesday, August 14, 2002 at 08:56 PM (CDT)
Day +50: 1/2 Way to 100!
It looks like Alex may have turned a corner! His mouth and throat actually are more sore than yesterday, but he has not run a temp over 100.0. And there has been no nausea. The doctors are pleased and said that we may be able to go home tomorrow if Alex feels up to it. That would mean Alex would have to take all of his meds orally. They started the Flagyl by mouth this afternoon and he did ok, but it hurts everytime he swallows. He is also still having a lot of mucuous. My guess is that Alex will not want to leave tomorrow, and that we will more likely leave the hospital on Friday. Only he knows his level of discomfort. Watching him wretch up the mucous, I don't know that if I were him I would want to go home. But the idea of sleeping in our own beds is motivating!
Alex is still not eating, so when we go home I would go back to playing nurse and administering his TPN. I would also be administering by IV one of his two daily doses of the Ganciclovir for his CMV. They say it is easier than the TPN. Doing all this will be easier for me with this dischage, because I'm no longer intimidated by it all. More good news, his 2nd CMV antigenemia test came back negative and his counts are still good. We also have not had any bad side effects from the antifungal.
Before signing off I'd like to say Happy Anniversary to Dennis. It is our anniversary tomorrow. Although we are apart, I know I have his love and support to lean on and give me strength.
We are blessed.
Sharon and Alex
Tuesday, August 13, 2002 at 08:56 PM (CDT)
Day +49: They Found Something
Alex has had a hard day. He was up a couple of times last night with stomach upset and then at 6:00 am he "wretched up" a bit of mucuous along with some blood. Afterwards, I looked in his mouth to see if it was the sores that were bleeding and couldn't believe the inflamation inside his cheeks and on his tongue. The doctors believe he has similar sores in his throat and that is where the blood came from. Along with some nausea, he just felt "icky" all day and was very tired. He didn't eat or drink anything and still isn't talking. We're back to salt and soda water mouth rinses.
I spoke with the doctors this afternoon after they consulted with the radiologist on his chest CT Scan and the infectious disease doctor. First, Alex's EBV test (mono) was negative. The radiologist found no sign of infection and that in fact his scan looked better than the previous one. The infectious disease doctor understood the doctors' concern about Alex's fevers, even though there is no direct evidence of a fungal infection. Apparently FA patients have more of a tendency to have fungal infections, and thus they are more aggressive in their preventative course of treatment. She recommended that they try a 2-week course of treatment using a new drug (FDA approved it in May) called Voriconazole. This will replace his fluconazole. It is a stronger antifungal than the fluconazole, is as effective as the Amphotericin B they had previously been considering, but does not have as severe of side effects, especially on the kidneys (which they were concerned about because he is on the Ganciclovir). The more common side effects are blurred vision, headaches, rash, and change in liver enzymes.
Late this afternoon, we finally had a culture come back positive. He has clostridium dificile which is an aenerobic (sp?- I sure wish this had spellcheck!) bacterial infection. My understanding is that these type of infections are gastrointestinal and generally caused by antibiotics, which can kill some of your "good" bacteria. They will be treating it with Flagyl, over a 14-day period. They do not feel this explains all of Alex's fevers and symptoms. They think that maybe when his initial fevers started to decline and then went back up this week that the second set of fevers was due to this, and the antibiotics he has been on. Other good signs today are that Alex's counts are still good (WBC-4.0; ANC-2.5), his blood pressures that have been running high are much lower and he has had less fever. We're hoping for continued progress tomorrow.
I've had a number of supportive conversations today with Pam, Stacey (our social worker), and some other parents, and the husband of an Adult FA BMT patient. There are truly some amazing people here to draw strength from. We are so lucky to know them.
We haven't forgotten Dennis and John, Gene and Lynn, Lee and Robyn, Maryanne, and our other family members and friends. We miss them terribly. Dennis' brother, Larry and his wife Nancy, are now in Shreveport for a couple of weeks to help out with John. We are so fortunate to have such giving family members, helping us get through this challenging time.
We are blessed.
Sharon and Alex
Monday, August 12, 2002 at 08:14 PM (CDT)
Day +48: More Scans, More Cultures
There has not been much change today. Alex still has fever, some mouth sores, mucous in his mouth, and maybe a little more stomach upset. The doctor's are still trying to locate the source of Alex's fevers. They took more cultures, are checking up on a EBV test (mono), and performed another CT Chest Scan. It is still their belief that Alex's fevers are from something viral, but want to be sure they don't overlook something. They have preliminarily talked about trying a different antifungal if the fevers do not subside, Amphotericin B. It is a stronger antifungal than what Alex is on now, but also has greater side effects--the kidney, shaking, chills and fever, etc. I'm hoping we won't have to do that.
School started in Shreveport today. Just a reminder of how life goes on outside this hospital. Sometimes it feels like we're in a cocoon up here. I spoke with the Vice Principle and they are going to work with us so that Alex can accomplish what he is able while we're here.
I wrote before about a man, Greg and his wife who were on the Adult BMT Unit. His wife had been in the hospital for well over 100 days, and had had some serious complications. Well, guess what? She is being discharged to a rehab hospital tomorrow. That was such good news to hear. Greg has been so positive and inspirational for me. I will miss seeing him in the hallways.
We are blessed.
Sharon and Alex
Sunday, August 11, 2002 at 09:38 PM (CDT)
Day +47: Symptoms Continue
It has been a quiet day. Because Alex's mouth feels so "icky" he has not wanted to talk much. (He's such a chatty Kathy, y'know.) He still has a lot of mucous. Thank goodness for Yankers (sluuurp)! (That was for you Lee!) His temperatures have continued off and on, the highest at 102.1. His blood pressures are higher, but not so high that he is back on medication. He's not eating, but the 24 hour TPN can cause him to lose his appetite. They should start cycling it in a day or two. The doctors still believe Alex is just fighting a virus, and for us not to be surprised if it takes another week for the fevers and symptoms to go away. The doctor is pleased that his counts are as high as they are on the ganciclovir. Today his WBC was 3.7 and his ANC was 2.3. I'm glad about that too. The longer we can put off transfusions the better.
Alex and I did watch a couple of movies, had a few laughs and took a brief walk around the unit. If we're going to be here awhile, we'll need to keep him up and moving around when he can. With company gone, we'll also need to start fitting in some school work again.
From all accounts, it sounds like my siblings gave my parents an enjoyable and meaningful 50th Anniversary party. It has felt strange being on the "outside" of this family event. I love my family!
We are blessed.
Sharon and Alex
Saturday, August 10, 2002 at 02:45 PM (CDT)
Day +46: Hello Again
Once again I apologize for not updating the web page and hope I have not caused too much unnecessary worrying. My time has been spent taking care of Alex, interacting with doctors and setting aside time for Dennis, John and Lee. I have simply been too pooped at bedtime to write. It is Saturday afternoon, we're still in the hospital, company has left (boo hoo), and I have found a quiet moment.
Things are looking better medically (as I'll explain in a minute), but Alex has also had a few rough days. Besides the fever, he has been experiencing nausea, primarily from mucous drainage and mouth secretions. He has vomited a few times, his medications have been moved from oral to IV, and he is back on the TPN, or intraveneous nutrition, because he has not been eating and thus, losing weight again. The good news is that his fevers are lower than they used to be (101 versus 104), and farther apart. Also, none of his cultures have grown anything and his full body CT Scan that he had done on Thursday night did not show any signs of infection anywhere. The doctors feel quite certain that he is fighting a viral infection and not a bacterial infection. He is still on antibiotics as a precaution, but had to be removed from the Vancomycin because it can only be administered for 72 hours if there is no confirmed evidence of infection. The reason is that they don't want to build up any resistance to this more powerful, effective antibiotic in case he may need it later. The doctors believe we will be in the hospital several more days. They think it will take that long for his fevers to go away and for the symptoms to recede. So far today has been his best day since we were admitted.
More good news. Alex's chest xray and opthamology exam to look for the CMV (cytomegalovirus) were negative and the follow up CMV antigenemia test which previously was positive came back negative yesterday. That means the ganciclovir is working. So far his kidneys are ok and his ANC is fine. The doctor said he still expects that there will eventually be some bone marrow suppression from the ganciclovir, what is not known is when within the 8-week course of treatment it will occur.
Everything during the last week did not revolve around Alex's hospitalization. Lee had a chance to go out one night with an acquaintence from college; Dennis and John were able to spend a day at the Mall of America (including Camp Snoopy); I was able to take advantage of a Healing Touch session at the Mind, Body and Spirit Clinic which was just wonderfully relaxing and rejuvinating (this was a gift from my church women's group, Sisters of Miriam); and Dennis and I were able to go out to dinner to celebrate our 7th Anniversary--Lee stayed with Alex and Pam came and stayed with John. We had a wonderful dinner at a downtown Japanese restaurant and then we spent time afterwards walking through a warehouse district, enjoying the architecture and entertainment and living options.
I want to take a moment to thank Lee for visiting and making her brother laugh, caring for him, and scratching his bald head. I also want to thank Pam for providing us with quality family time and the Sisters of Miriam for helping me to take care of myself. I also want to thank all of you who continually keep us in your thoughts and prayers, especially when we encounter our tough times. And lastly, I want to thank my brothers and sisters for all their work over the last couple of months, in hosting a wonderful party for my parents 50th Wedding Anniversary today. Mom and Dad, you are a special couple, special parents, and I hope you thoroughly enjoy your day. We wish we could be there to celebrate with you, but since we can't -- HAPPY ANNIVERSARY!!!!!!
We are blessed.
Sharon and Alex
Tuesday, August 06, 2002 at 10:21 PM (CDT)
Day +42: Disappointment
Yesterday had its ups and downs. We went from Clinic where the doctor said how well Alex was doing, to seeing the movie, Men in Black 2, to running a fever of 102.8 and getting readmitted to the hospital.
As last time, they have taken all kinds of cultures and put Alex on broad spectrum antibiotics. We're still awaiting word on the cultures. Alex has run fever off and on today. The bigger disappointment was that Alex's test for CMV (cytomeglia virus sp?)came back positive. I left my notes and medical resources in the hospital room, so I'll try to explain what's going on as best I can from my memory. CMV is a latent virus, one of the herpes complex, that can reappear when the immune system is suppressed as Alex's is. It can affect the lungs, brain, eyes, and liver, and G.I. tract. The test which identifies the presence of CMV is very sensitive and thus, hopefully provides the opportunity to eliminate it early on. Alex will be removed from his Acyclovir and given Intraveneous Ganciclovir. The course of treatment last 8 weeks. The primary side effects of Ganciclovir are on kidney function and suppression of the bone marrow (or blood cell lineage). His kidneys are in great shape right now, but will be monitored. If his counts are suppressed, he will require more transfusions and GCSF, or growth factor. I'm not sure if or how this sets us back in terms of the minimum 100 days. I still need to ask. In addition to the Ganciclovir, Alex got a chest xray this evening and willl soon see the opthamologist.
The doctors are not sure if the CMV is responsible for the fever or whether there is some other source causing it. We know Alex will stay in the hospital until the fever has subsided. The IV Ganciclovir will be handled at clinic, by the home health care agency, the BMT Clinic or myself. It was certainly good to have Lee's good spirits cheering Alex up when he found he had to go back in.
I'll try to provide more info tomorrow. I'm very tired and need to go to bed. Alex's room number and phone number are on the front of the web page.
We are blessed.
Sharon and Alex
Sunday, August 04, 2002 at 08:40 PM (CDT)
Day +40: The Love of Family
The computer finally came to a standstill, and with Dennis in town, he was able to take it to a computer repair business and get it fixed today. So we're back in business! Alex was discharged from the hospital Friday afternoon. He was still having some stomach upset and some fever, but they felt he could just as well have a stomach ache at home, and that the important thing is that he did not have a bacterial infection. His WBC was a little low on Friday (2.3), but went up to 3.0 on Saturday.
Boy, was Alex energized on Saturday! He came to life when his sister Lee arrived, followed by Dennis and John. Dennis, John and Lee were all fascinated by Alex's bald head. John decided he would like to be bald too. The highlight of the day was when a thunderstorm blew through around 6:30pm and the lights in part of the house went out, including, of course, our rooms. Part of the kitchen area still had lights, so it forced several of us families downstairs. Dennis, Lee and Alex spent the evening playing Hearts while John played in the play room. We had to go to bed in the dark. The electricity didn't come back on until 4:00am.
Today has been low key. I believe all of us were tired. Alex was particularly tired, probably from all the activity of yesterday. But we have had a good time laughing together. In fact, Alex and Lee are watching Monty Python and the Holy Grail as I write. We did go on a small excursion, a walk up to the Weismann Art Museum here on the University Campus. The building is unique--designed by Gehry. Dennis liked it. I thought if didn't quite fit the site on which it was built. We took Alex in a wheel chair. Lee had fun pushing him, especially when John decided to hitch a ride. She said she needed the workout.
Tomorrow we have clinic first thing in the morning. I know we want to fit in some food shopping and some other "fun" activity tomorrow too. But I've learned we have to take one day at a time. I just know that it is great to have family to laugh and share experiences with.
Just before coming up to the room for the evening, I met a woman whose 3 year old is day +20 from a matched sibling transplant, has Fanconi Anemia, and is already out of the hospital and doing well. It's good to see others facing the same health challenges and experiencing success.
Family (in all its forms) is one of the greatest blessings--
We are blessed.
Sharon and Alex
Thursday, August 01, 2002 at 10:05 PM (CDT)
Day +37: A Better Day
Alex awoke this morning feeling better, not back to "normal", but better. His temperature has stayed around 99.3 and he's been able to take his medications without much complaint and has eaten more. He is still having some occassional stomach discomfort and is weak. The good news is that so far there have been no growths in his cultures. The doctors said if his temp stays down and the cultures don't show anything that we will be discharged late tomorrow afternoon. I also got them to slow down the Vancomycin to see if he could go without the benedryl, and it worked. This allowed Alex to be alert almost all day. He even laughed today, which is always a sign he feels better. Both Alex and I are glad that we may be back home when Dennis, John and Lee come in on Saturday.
We'd like to sign off by wishing Robyn, Alex's (other) big sister, a happy birthday. Robyn turns 21 tomorrow! We hope it is a special one for her.
We are blessed.
Sharon and Alex
Wednesday, July 31, 2002 at 09:42 PM (CDT)
Day +36: We're Back In
At the Ronald McDonald House all you have to say is, "We're back in!" and everyone knows that means your back in the hospital. We were admitted about 11:30pm last night. Alex's temp went up to 101.0, over the magic line of 100.5. Perhaps it was the sprint down the stairs during last night's fire alarm. It always amazes me how long it takes when you enter the hospital. Having the nurses and doctors check you out, getting blood drawn, IV's connected, histories reviewed, etc. We weren't left alone until about 2:00am. What was worse, they had a hard time coming up with a sleep chair, and I had to sleep for an hour on a window bench. If I was any bigger, I would have had no choice but to crawl in bed with Alex. I should mention that we are not in the BMT unit, we are up on the Pediatric Unit on the 5th floor, but in a room prepared for BMT patients. The room is smaller than our last, but we won't be here long (See, I'm staying positive!).
They are running a bunch of cultures to rule out any obvious infection--blood cultures of both lines, two throat cultures, a nose culture, and urine culture. They are giving Alex two broad spectrum antibiotics intraveneously. The Vancomycin makes him "itchy", so they pre-medicate him with benedryl, which of coarse makes him sleepy. Alex is still having a bit of general stomach discomfort, which has nipped his appetite in the bud, and requires a great deal of mental motivation to take all of his medications. The doctor's still believe that what he has is probably viral, but that he would not be released until his cultures come back negative and his temperature goes away. I hope for Alex's sake this resolves itself soon, because he's not having any fun of late.
Alex's temperature has not been as high as 101.0 today--two readings were 100.3 and an evening reading of 99.8. His WBC was 3.0, his ANC was 2.3, his hemoglobin 8.3 and platelets 46K. So everything still looks pretty good in the scheme of things. Alex I'm sure wants to know why if he's doing so well, why doesn't he feel better.
I took a break today and went back to the apartment and vacuumed and dusted. The room needed it and I wanted to get it done before Dennis and John arrive on Saturday. I can't vacuum or dust with Alex in the room, (he has to leave for during and for 20 minutes afterward), so I took advantage of the hospitalization. Lee, Alex's older sister is also arriving on Saturday. Both Alex and I are excited to have family visit. Nothing like having those who love you around to buoy your spirits.
I saw the husband of a patient from our adult BMT unit. His wife has been here a long time and he said she was about the same. In our previous meetings he was always so friendly, supportive and optimistic. Today he was very weary. Please send him and his wife your healing energies--phyisical and spiritual. I tell you this place provides me with so many lessons. My challenge will be to carry them with me once I leave.
We are blessed.
Sharon and Alex
Tuesday, July 30, 2002 at 09:41 PM (CDT)
Day +35: Concerned
Alex is still having various stomach discomfort off and on and is running a temp of 100.3. So it keeps me concerned that something isn't quite right, but he's not over the line to require a call to the doctor. We tried to go to the game card shop today, but about 5 minutes after we got there, Alex started having stomach cramps so we came home. We'll try again some other day. And who knows, maybe tomorrow will be better and we can go to a movie.
Pam came over today and sat a couple of hours with Alex, so I could get my hair cut. It was nice to get that done and do something for myself, but I'll have to admit I did worry about Alex while I was gone. I really appreciate Pam giving me a chance to get out now and then. She's taking good care of me.
Alex and I actually went downstairs tonight to eat. I convinced him to pick out a movie while I made him some rice. In the meantime I struck up a conversation with two grandparents--Betty and Bill and their grandson, Eric, who is 18 and had a transplant 3+ years ago. They are such nice people--lots of fun. And Alex sat at the table with us for awhile and joined in the conversation. I was surprised and pleased. I think he actually enjoyed himself (even though he didn't end up eating the rice).
By the way, I am still having problems with my computer. I may have gotten a virus. I don't know if it will keep on working, so if there is an entry missing don't get too worried. Dennis is going to bring up some anti-virus software to see if that will take care of the problem. Also in the meantime if you get any emails from me with an attachment and no message, don't open them.
Well, I'm back. My hands are still shaking. The fire alarm for the House just went off, boy was it loud. Alex had just gotten out of the shower and I was telling him to dress fast so we could get out. Fortunately it was just some badly burnt popcorn in the main kitchen downstairs, but it took a little time to get the alarms turned off. With that excitement behind us, I'll say goodnight.
We are blessed.
Sharon and Alex
Tuesday, July 30, 2002 at 09:41 PM (CDT)
Day +35: Concerned
Alex is still having various stomach discomfort off and on and is running a temp of 100.3. So it keeps me concerned that something isn't quite right, but he's not over the line to require a call to the doctor. We tried to go to the game card shop today, but about 5 minutes after we got there, Alex started having stomach cramps so we came home. We'll try again some other day. And who knows, maybe tomorrow will be better and we can go to a movie.
Pam came over today and sat a couple of hours with Alex, so I could get my hair cut. It was nice to get that done and do something for myself, but I'll have to admit I did worry about Alex while I was gone. I really appreciate Pam giving me a chance to get out now and then. She's taking good care of me.
Alex and I actually went downstairs tonight to eat. I convinced him to pick out a movie while I made him some rice. In the meantime I struck up a conversation with two grandparents--Betty and Bill and their grandson, Eric, who is 18 and had a transplant 3+ years ago. They are such nice people--lots of fun. And Alex sat at the table with us for awhile and joined in the conversation. I was surprised and pleased. I think he actually enjoyed himself (even though he didn't end up eating the rice).
By the way, I am still having problems with my computer. I may have gotten a virus. I don't know if it will keep on working, so if there is an entry missing don't get too worried. Dennis is going to bring up some anti-virus software to see if that will take care of the problem. Also in the meantime if you get any emails from me with an attachment and no message, don't open them.
Well, I'm back. My hands are still shaking. The fire alarm for the House just went off, boy was it loud. Alex had just gotten out of the shower and I was telling him to dress fast so we could get out. Fortunately it was just some badly burnt popcorn in the main kitchen downstairs, but it took a little time to get the alarms turned off. With that excitement behind us, I'll say goodnight.
We are blessed.
Sharon and Alex
Monday, July 29, 2002 at 09:48 PM (CDT)
Day +34: A Third of the Way Home?
We know we have to be here until Day +100, at a minimum, so we're hoping that all continues to go well, meaning we've done a third of our time (post-transplant). Is it too early for a woo hoo?!
Yesterday morning we went to clinic and Alex received platelets. They gave him oral benedryl thinking it wouldn't make him as tired. Alex was able to walk out afterwards, but then slept for several hours in the afternoon and never fully woke up the rest of the day. His temp bounced around between normal and 100.0.
Today we went to clinic and saw Dr. MacMillan, our primary physician. Alex had a new symptom this morning of pain in his upper stomach, feeling like it was churning, but that if he ate he would get sick. This was at 5:45am. I convinced him to eat some Cheerios, drink a little water, and it got better. He had the same discomfort at 8:00 and we went throught the same routine. When we talked to the doctor about this she said that it may be acid, and prescribed Zantac. We'll see if that does the trick. She also said that it just takes a long time for the gastro intestinal system to get back to normal. They took blood cultures as a preventive measure since Alex had been running a fever yesterday. He didn't run any fever today until late this evening.
Alex's WBC was 2.9, his ANC 2.0, his Hemoglobin 8.7 and Platelet's 71. I asked the doctor about his declining WBC over the last week and she seemed unconcerned--that normal for patients at this stage is anywhere between 2.0 and 4.5, and that it will bounce around. She said the important thing is that they know he has the producing cells in his marrow, and that it was just a matter of time. His liver ALT was back to normal, which means he is back on his Itraconazole, and off the Nystantin, both anti-fungals, but the Itraconazole covers a broader spectrum and thus is preferred. Alex never liked the Itraconazole, but now prefers it to the Nystantin which he had to take 4 times a day. The doctor also took Alex off the TPN, because he was eating and gaining weight. That frees us up and simplifies our life a bit--so no complaints here.
We went over with the doctor once again about activities we can do and precautions to take. She said if Alex was up to it that we can go to the mall, go to the movies, go to a restaurant, etc., just that we should go when they are the least crowded, and we should do plenty of handwashing. So we're going to try to go to a game card store in the morning. The doctor really encouraged Alex to get out, and basically said she wanted a movie report when we see her on Thursday.
Today we met a mother and daughter (with FA) in clinic who was 6 months post transplant. The girl was given the ok to go without her mask, was having her line removed today, and being phased off her Cyclosporin. It was great to see someone doing so well and achieving milestones. It gave me the shivers, knowing she was reclaiming more normalcy in her life, and gave me hope that that day lay ahead for us.
Both Alex and I have received special gifts of late. Alex's gift was pretty special and quite a surprise. He received a baseball signed by Paul O'Neill from his Aunt Kathy and Uncle Gary. Apparently they knew someone who knew someone....somehow they made it happen, and Alex was tickled to death, so a BIG thank you goes out to them. (For those of you who may not know, Paul O'Neill is a retired Yankee's baseball player.) I've also received a few gifts in the spirit of making sure I take care of myself. Thank you U. Keith and A. Vonnie, thank you Sisters of Miriam, and thank you Cherrie. Y'all are so thoughtful--thank you for reaching out and helping me to do what I need to do to remain a good caregiver.
I have truly met some amazing families here at Ronald McDonald House. Many have children whose health hardships are greater than ours, who are dealing with those circumstances with toddlers and newborns in tow, and have been doing this for years. And you still see laughter, joy, generosity, and humility. It is inspiring!
We are blessed.
Sharon and Alex
Saturday, July 27, 2002 at 08:07 PM (CDT)
Day +32: Hanging Out
I wasn't able to make an entry yesterday, because we were having problems with our internet connection. Both yesterday, continuing through today, Alex has continued to run a small temperature, although his demeanor has improved. The doctor's indicated that he was probably fighting a virus and it would just take him a while to get over it. He has been more tired, and not wanting to do much. I finally enticed him out of the room today by promising to drive to a game card shop and buy him some Magic booster pacs. I know it helped me to get out.
On Friday, the nurse took him off his blood pressure medication, because it was on the lo side of normal. We will find out Monday if it has stayed down on its own. If so, that would be one less pill to take. His WBC was down a bit at 3.0. I asked if it had anything to do with his temp. They didn't really know, but didn't seem too concerned. It probably is still a good count for this stage of the game. His hemoglobin was also down to 9.8. We go in tomorrow for blood work and possibly platelets and RBC's. If he doesn't get them tomorrow he probably will on Monday.
I want to take a moment and give a special thanks to my Mom and Dad. They returned home to San Jose today after spending a month in Shreveport helping Dennis out and helping to take care of John Wesley. I am so lucky they are able and willing to help my family out during this time. Mom and Dad, you have made this ordeal easier for not only me, but Dennis and John. I spoke with John today shortly after y'all left and he sure was sad. I know how he feels. I still get sad when I have to say good bye to you two. We love you very much!
We are blessed.
Sharon and Alex
Thursday, July 25, 2002 at 09:18 PM (CDT)
Day +30: Still Feeling Puny
Today was a quiet day. Alex is still feeling puny. He laid around in bed most of the day, tired, dizzy, nauseas and with a temp that hovered between 99.6 and 100.3, but never reached the benchmark of 100.5. We have clinic at 10:00 tomorrow, so I guess we'll see what the doctor's think then. Alex really does not want to go back to the hospital! Hopefully this means he's fighting whatever it is he's got.
I spent the day doing laundry, cleaning the bathroom, making phone calls, and taking care of Alex. I also picked up a few movies from the RMH Library for Alex to watch. It will be nice to get out of the apartment tomorrow if only to go to clinic.
We miss all our friends and family. I know Alex enjoys all the messages, cards and generous well wishes from everybody. Thank you for keeping in touch with him.
We are blessed.
Sharon and Alex
Wednesday, July 24, 2002 at 09:11 PM (CDT)
Day 29: Feeling Puny
It was a puny day all around for Alex. He woke up tired and that feeling hasn't really left. They took his temperature in clinic and it was 100.0. I think his body must be fighting something. The nurse practitioner indicated if his temp went up to 100.5 they would probably hospitalize him. Fortunately his temp has hovered around 100.0, but not above. If he still has this temp in the morning we'll have to go back to clinic even though it was supposed to be our day off. They took a blood culture just in case he took a turn for the worse.
It was a long day at clinic. Alex was also feeling nauseas so they gave him some atavan, and then they gave him some benedryl for his platelet transfusion. Between the two he slept off and on from 10:00 until 3:30 this afternoon. He just couldn't wake up to make it back to the apartment. I find sitting in the doctor's office that long tires me out even though you're not really doing anything. Maybe boredom is more stressful than I thought.
We didn't do much with the rest of the day--just seeing what Alex could eat (he didn't eat anything until 4:00 today), getting fluids and meds into him, changing bandages, etc. We enjoyed watching the Yankees game tonight. (They won of course!)
Here's hoping tomorrow is a better day and that Alex's fever stays down.
We are blessed.
Sharon and Alex
Tuesday, July 23, 2002 at 10:03 PM (CDT)
Day 28: A Day Off
It was great to just hang out today. I know Alex enjoyed it! As a result our day was relatively quiet, mostly spent in our apartment. Alex worked on his Health, trying to complete the second unit of the book before Summer School officially ends here on Thursday and we don't have access to a teacher. Between now and when school resumes in early September, he'll be able to finish the work sheets for the rest of the book and take the tests later.
I don't know if I mentioned that Alex is now completely off of his methylprednisone (steriod). That means 6 fewer pills to take daily. Fanconi Anemia patients are often off steroids sooner than others because it is an immune suppressant, and FA patients often are at a higher risk for infection. Or at least that is my understanding. It is a bit of a struggle for Alex to take his medications at 5 different times during the day. He has to motivate himself through it. Our challenge will be to not feel like our life revolves around our medication schedule.
Other than that, Pam came by today and sat with Alex while I went and did some grocery shopping. I discovered another card game store for Alex to buy cards from whenever that becomes a permitted activity. I'm hoping on Thursday he'll want to get outdoors and do something.
We have clinic tomorrow at 10:00. That will be the focus of our day. So it's off to bed!
We are blessed.
Sharon and Alex
Monday, July 22, 2002 at 09:30 PM (CDT)
Day +27: 100% Donor Cells!
At clinic today we found out that Alex is fully engrafted and that he has 100% donor cells. Technically it is 99.2%, but they consider that 100%. Alex's WBC was 4.1 and his ANC 3.1. His Hmg was 10.7 and platelets 41. AND, still no sign of GVHD! Dr. MacMillan (Alex's Primary Physician), thinks he is just doing great. The doctor confirmed that the little bit of blood in Alex's urine is just irritation from the chemo, and drinking fluids should resolve it. His lab work did show that the Itraconazole (an anti-fungal drug) has affected his liver. He was put on a different drug, Nystatin, until the liver blood tests return to normal and then they will start the Itraconazole again. I must be getting a little weary because I didn't ask questions, nor fully understood what this meant or what the Nystatin was supposed to do. I know the doctor indicated that this was no big deal and is common. I guess I'll be more responsible at the next appointment and get better explanations. Alex is doing so well, that we only have appointments for Wednesday and Friday this week. If all goes well, she said we would probably only come in on Monday and Thursday of the following week. Having some time off might allow Alex and I to plan some outings.
My challenge today was to get our new medication filled and delivered. The pharmacy wanted to deliver it tomorrow. So, I called our insurance company to once again tell them that the arrangement was not acceptable. I finally talked to someone who actually tried to help me and it looks like I can use the Fairview Pharmacy. I don't know why it didn't work before. We'll see what happens next time I try to fill a prescription. We also got our air filtration machine today. Since I'm not mechanically inclined, I was glad it was easy to set up. Here's to cleaner air!
Once again, thanks are due to Pam. She went and picked up the prescription. She's also going to help me out tomorrow and spend some time with Alex while I go grocery shopping. It's sure nice to have a friend in town.
Alex and I went in search of chocolate donuts this morning. We didn't find the exact kind of donuts Alex wanted, but found instead a great little Polish bakery. We then looked for a place to find a drink and found a small Polish deli, with no drinks, but an amazing selection of sausages. It is these kind of finds that make a big city so interesting. The area around the deli also looked like it had some interesting restaurants and bars. There is so much to explore and no time to do it.
I just want to mention that we met a family in clinic today with a son with fanconi anemia. They were here for their work-up and consult to decide about going to transplant. They apparently have been following this page and recognized us because Alex was wearing his New York Yankees hat. My heart is with this family. Making the decision to go forward was almost as difficult as the last month has been. I wish them clarity and resolve to know that they are the only ones who can make the decision that is best for their son. I will keep them in my thoughts and prayers.
We are blessed.
Sharon and Alex
Sunday, July 21, 2002 at 09:16 PM (CDT)
Day +26: Clinic=Endless Waiting
We were up and at it this morning again, arriving at clinic at 9:30. Everything was fine, but waiting for the lab results and urinalysis took forever. We did not leave until after 1:00. Being the slow risers that we are, we had not eaten much for breakfast, so we were starved by the time we got back to the apartment and made lunch. During our wait Alex was able to get some homework done and both of us took naps. Our wait is in an exam room, so the chairs aren't comfortable, the space is small. At least the hospital room felt like your own space. We took reading materials, and Alex his Game Boy, but that didn't last. Tomorrow I think we'll take a deck of cards. We're hoping maybe it will move faster since it will be a week day. Alex's WBC was 3.9. It is still bouncing around but seems to me that it is bouncing around at a higher level. His platelets are down to 51, but they said they would not transfuse him now unless he falls below 20,000. So I wouldn't be surprised if he has a transfusion tomorrow.
For Alex, the good news is that we don't have to be at clinic until 11:30. That gives us a little more time to sleep in (although his TPN IV will beep at 8:30) and time to find a place that sells donuts. Alex has been craving chocolate donuts so I promised I would search one out tomorrow. There are not any places around the campus that I know of. There are lots of coffee shops, but they sell more sophisticated breakfast treats--bagels, scones, biscotti.
The weather was nice today so we were able to use the wheelchair and walk to clinic, instead of waiting on the shuttle. Alex enjoyed being outdoors and while still a uncomfortable, is getting used to wearing his mask in public. Our wheelchair is a pediatrics one, so it is a little small for Alex. Hopefully I can get an Adult chair delivered tomorrow. (We should also have our air filter delivered tomorrow too.) I'm hoping as Alex gets more comfortable with wearing his mask in public, we can take a few trips to some of the area parks or other points of interest. He fortunately isn't uncomfortable with his bald head. He only wears a hat if he's cold or he's going to be outside in the sun. He has to be particularly careful about sun exposure. His skin is very sensitive as a result of the radiation.
Just as a reminder to all of you that while Alex is doing well medically, we still anticipate being here until day 100+. Alex still needs time for his body to heal and to make sure no complications show up during this time. Alex still has occassional boughts with pain and nausea, but they are less and less frequent. He is extremely weak. Just to walk down to the shuttle or car and then from the entrance up to clinic, tires him out. I'm sure it will be quite some time before his body feels "normal" again. After all he will be on some medications for up to a year.
We had a decent dinner tonight. I found a great deal on some pork tenderloin at the grocery store. Pork tenderloin is one of Alex's favorites. We combined that with some yellow rice, another favorite, and peas. Volunteer groups often provide meals once a day at the RMcHouse, but it has been a little light since July 4th. I'm not complaining becasuse it is frequent enough to provide a break to the take out or box type food. Having access to our own kitchen will be a treat when we get home.
But this is nothing compared to having access to our friends and family. We can't wait!
We are blessed!
Sharon and Alex
Saturday, July 20, 2002 at 05:27 PM (CDT)
Day +25: No more night nurses--Nurse Sharon on Board
I apologize for not updating the page for a couple of days. Coming home to the apartment has been more demanding than even I expected, but we are getting organized and will soon have our new routine down.
We didn't leave the hospital until 4:00pm on Thursday. This was mostly due to a problems with health insurance and getting our medications. Our drug insurance provider would not approve the use of the hospital pharmacy even though they specialize in bmt meds and have cheaper prices. They were insisting we use a Target, Walgreens, Kmart, etc., which posed the difficulty of traveling to those pharmacies and having to take Alex in with me, which I was not willing to do. Our BSBC Case Mananger unfortunately could not get them to make an exception either, but got a full list of approved pharmacies and started calling around to find out which ones would deliver. She finally found a pharmacy that would deliver, outside its territory, because they took pity on us. When the meds arrived to the hospital, there were ones missing. We got it worked out--the hospital gave us enough to get us through the day, and the pharmacy delivered the remainder of what we needed on Friday. It was amazing to see all those bottles, making sure I knew the purpose of each one and when during the day to administer them. Some are 5 times a day, some twice a day, some only once, some on Monday and Tuesday only, some every 3rd day. Friday I finally had a chance to go through them, to organize a chart for me to refer to, and get a weekly pill box (organized by time of day). I think I am just now on top of it!
Shortly following our discharge the home health care agency showed up to give me training on giving Alex his TPN (IV nutrition). They were here for 1 1/2 hours! It was more complicated than I expected. On Friday they came back, and I had to go through a second training. Basically it requires knowing how to flush Alex's line before the TPN is connected, how to prepare the TPN, adding multivitamins, priming the IV line, putting it in the pump and connecting the TPN to Alex's line, and disconnecting and flushing the lines in the morning. Tonight I have to try it on my own. Wish me luck! I am also responsible for changing Alex's dressing on his Hickman Line. I'm sure it will become second nature, but now I have to read everything step by step. I had a small problem with the pump in the middle of the night, called the agency and got it taken care of. As a result they had to make another visit back out here today. The supplies for the TPN and bandages take up a bit of space. I am so thankful to Pam for getting me the 3 drawer container. It has been a lifesaver in this small space. I hope Alex will keep eating so well that he will not be on the TPN too much longer. It would sure simplify our lives. He is now eating regularly during the day, just not full meals.
Friday night after the TPN training I ran out and picked up dinner for Alex, Gene and I at BK while Gene watched Alex. After dinner, I ran to Target and the grocery store to pick up some things since I would be one-on-one with Alex once Gene left, and it would be awhile before Alex could spend that amount of time and energy out. I didn't get back and groceries put away until about 10:00pm. I was pooped! And so no journal entry.
Alex and I were up early the next morning to get ready to go to clinic. Our appointment was at 9:00. Of course, we had to get our meds taken and TPN disconnected. Our clinic visit went fine overall. Alex's weight had increased, his temp and blood pressure was fine, his WBC was 4.7, his hemoglobin was 11.3 and his platelets were 101. The only problem was that one of his lines would not draw again. They decided they would deal with that later, that perhaps it was positional, and told us not to return until Sunday, because Alex would probably need platelets.
Well, that didn't quite work out. Last night Alex had some blood in his urine and was also having pain around his Hickman Line site. I called the "on-call" doctor, and he said we should come into clinic today. So we went into clinic today at 9:30 and left at 2:00. Through a urine sample they determined that there was indeed blood in Alex's urine. They did not seem overly concerned at this point and indicated that it could simply be a result of the chemo and meds and that Alex should drink plenty of fluids to keep his bladder flushed. His counts today were: WBC-3.7, ANC-2.5, Hmg-10.7, and Platelets-77. On his line, they tried flushing and drawing again, that didn't work, so because of that and his pain, they wanted us to have a chest x-ray to make sure the line was properly placed. That took time, but we learned the line was just fine. So we went back to clinic, and they put TPA in the line to clear any clotting. It didn't work in the time frame they thought and they decided to try the TPA again, but we had to wait for another order and for it to come up from the pharmacy. In the interim the nurse checked Alex's site where the line comes out of the chest wall. She eventually determined that the stitches at the entry site were what was bothering Alex. So the doctor was called and he removed the stitches. It was a bit painful, but Alex said the pain was gone once he was through. We just now have to be a little more careful about keeping the site secured. The nurse then decided she would try the line to see if would draw blood, since the TPA had still not arrived, and it did! So we were ecstatic that we could finally leave.
The rest of our day has been low key. We went to get Alex some drive'thru pizza and Alex asked for me to take the "long way" home so he could see a little more of the real world. When we got home he said the pizza was old, so I microwaved some Tony's pizza. We then watched the remainder of the Red Sox/Yankees game, in addition to the visit from the Home Healthcare Nurse. The game was a great one for any of you who didn's see it. It went 11 innings! And of course our Yankees won!.
I'm not going to review this update, so I'll apologize ahead of time for any errors. Alex has been napping while I've been typing. It's time for meds, dinner and getting the TPA ready. Nurse Sharon is now on duty!
We are blessed!
Sharon and Alex
Wednesday, July 17, 2002 at 10:08 PM (CDT)
Day +22: First Good Day In A While
This was Alex's best day in a while, since before the seizure. He was still weak, but was awake and alert most of the day. I believe the difference was that he was fully off the anti-seizure drug, dilantin, and only on the Keppra. The dilantin made him extremely drowsy, interferred with his vision and made him dizzy at times.
The main issue we dealt with today was Alex's weight. He has lost weight recently. Part of the trick to getting him eating again is to keep him awake and from being nauseas. Last night he took some codeine for pain relief, but it made him as Alex said, "extremely nauseas", so I asked the docs to provide him with a different pain reliever. I think they will be trying oxycotin or something similar. They are also going to try a drug with THC, the same active ingredient in marijuana to help pick up his appetite. If his appetite doesn't pick up they may decide to feed him through a gastrointestinal tube. When Alex heard that it motivated him to eat half a slice of pizza and half a hamburger today. He will still be on his TPN at night. Think munchies!
Alex's counts were pretty good. The WBC was up, to 2.7, the ANC was 1.8 and hemoglobin was 11.8. His platelets were 52,000 this morning so I wouldn't be surprised if he got a platelets transfusion tonight.
Spent a good part of the day getting ready to come home to the apartment tomorrow. Cleaned Alex's bedding, the bathroom, the shower curtain, etc. Also carried home some of the things from the room. I hadn't realized how much we had brought into the hospital in the month or more we've spent there. I also had to spend some time getting our medications approved by our drug benefit plan, because they do not consider the Fairfield Discharge Pharmacy as in-network. After several phone calls my BCBS Case manager was able to find a local in-network pharmacy who was willing to deliver the meds to us. Nothing like insurance to stress you out at the last minute.
Alex will require 24 hour supervision at first. In some respect, there is less flexibility now, however there is the advantage of being in your own space. Assistance will be coming soon. Dennis, John and Alex's sister, Lee, will be visiting in a couple weeks, and my Care Partner Volunteer, Pam, said she could assist with picking things up for me from the store. Pam is so thoughtful. Today she brought a plastic 3 drawer set container for me to keep all Alex's meds in, bandage changes, etc., to keep them organized. I wouldn't have thought of that. It will be so useful.
I have another big thank you to mention. My good friend Elaine Stella and her husband, Mark, are assisting us with air miles. Because of them, Dennis and John will be able to make it up for a second trip and Lee for her visit. It will be such a treat for Alex to have a visit from his sister. So, Elaine and Mark, thank you for the gift of family.
We are blessed.
Sharon and Alex
Tuesday, July 16, 2002 at 10:04 PM (CDT)
Day +21: Napping Pro
Alex spent much of the day sleeping off and on. He also had boughts of dizziness, light headedness, problems with focusing his eyes, weakness and fatigue. They keep implying that it could be from the anti-seizure medications (he's on two now, but will only be on the Keppra starting tomorrow), and that his body will adjust to the medication over time, and/or that it is from all the oral medications. Starting today he took all of his medications orally. I kept asking to make sure. I guess I'm a little cautious due to the seizure.
The doctors say we can go home tomorrow if we want or wait until Thursday. Alex so far has said he would like to wait until Thursday because he is having a little back pain from the biopsy. I think like me he is having some anxiety about leaving the hospital too. This is a big step for him to take, because even though he is doing great in terms of the transplant, he still doesn't feel great. He'll also have the adjustment of his father leaving. Gene has decided to leave on Friday.
Alex's WBC today was 2.4 and his ANC 1.8. They keep bouncing around but overall his is maintaining, so that's good. His hemoglobin was 13.2! They checked his kidneys and CSA levels this morning because of the dosing error yesterday and everything was fine.
I spoke with the doctor regarding the biopsy. We'll have the results regarding engraftment next week. He said that between the smear and bone chip, all three blood cell lineages are there. There are not many cells, less than a 5% cellularity, but that is to be expected. The nurse coordinator said they also expect the test results to come back with 100% donor cells. She said so far that everyone with Alex's protocol has fully engrafted.
I had a great walk this morning--crossed two pedestrian bridges across the Mississippi. One was the Stoned Arch Bridge, part of a heritage trail. This included a view of some falls, locks and dams, and old mill areas. These falls were originally used to provide energy to the mills, instrumental in Minneapolis' beginnings. I really admire how pedestrian friendly the area is and am finding that I am becoming fond of this city (but then again it's warm here right now).
I want to take a moment to thank my good friends, Jenny and Sam Gregorio. They have loaned us one of their cars while my parents are in Shreveport. It has helped tremendously with picking up John from school and running errands. Jenny, Sam, thank you for your generosity!
Alex and I are off to bed. It will be a busy day getting his room packed up and the apartment clean and ready to go.
We are blessed.
Sharon and Alex
Monday, July 15, 2002 at 10:18 PM (CDT)
Day +20: Biopsy Day
This afternoon Alex got his bone marrow biopsy for the primary purpose of determining what percentage of cells in his bone marrow are donor cells. We will not have a confirmed answer for several days. According to the doctor, the initial smear looks good, showing "young" cells which produce the blood cell lineage. Alex is so calm about this procedure that he was half asleep before they even gave him any anesthesia.
The other good news is that his WBC increased to 2.6 along with his ANC to 2.2. He has not had a red blood cell transfusion in almost a week, and his hemoglobin today was 12.2. There are still no signs of GVHD.
Our discharge date has been changed to Thursday versus Wednesday. Alex will not be up to his full dose of cyclosporine(CSA) until Wednesday and they thought it would be best to observe him and let him go home on Thursday. He also started his Kepra today--the new anti-seizure medication. They will be giving him both dilantin and Kepra for two days until the Kepra reaches the correct level. The good thing with Kepra is that it does not interfere with the CSA levels the way dilantin does, and thus less chance for a repeat seizure. We had an error with the CSA dose today. The nurse gave Alex 3 pills this morning, when she should have given him one. This necessitated him skipping his evening dose. They said it was no big deal, because it did not exceed his 24 hour dose and that he had a strong "therapeutic level" of dilantin.
While Alex slept after the biopsy, we had a nurse come by to give us some tips on how to take oral meds in case Alex has a problem now or down the road. Boy, I wish I knew these before. I'm more likely to have a chance to use them on John. For example, she suggested that for liquid meds that don't taste good, she suggested slightly numbing the tongue with ice and coating it with a favorite flavor, or for thick meds, to drink something like chocolate milk first to get the throat used to the thick sensation. The nurse overseeing our discharge also came by. We discussed his medications, what they would give us for nausea and pain, temperature taking, blood pressure, wheel chair use, etc. He will probably still be on his TPN, his intraveneous nutrition, until Alex resumes a full diet. He will take his TPN at night, and a home health care company will show me how to hook it up. They will train me on how to care for his Hickman line and change the bandages too. As I mentioned before I'm a little nervous, but will be "in clinic" Friday morning so I won't be on my own too long. I started cleaning the apartment tonight so it would be clean before Alex comes home. I believe Clorox wipes will become constant companions as well as that hand antibacterial lotion. I'm trying to figure out how to protect Alex but not become a germaphobe. Only time will tell if I succeed.
I did want to take a moment to mention that it is typical for blood supplies to run low in the summertime. Alex could not have gotten through this transplant without multiple transfusions. If any of you are able, in honor of Alex, please find time to "give the gift of life".
We are blessed.
Sharon and Alex
Sunday, July 14, 2002 at 10:30 PM (CDT)
Day +20: Getting Ready for Discharge
Alex had a relatively good day. He was transitioned to more oral drugs and seems to be progressing okay with that. His WBC today was up a little to 2.1, as well as his ANC at 1.9. He got a platelett transfusion this afternoon. Alex has his bone marrow biopsy tomorrow at 1:00. It will take a few days to find out what the percentage of engraftment is. They told us they are now planning on discharging Alex on Wednesday, assuming there are no other problems.
Yesterday evening I was talking to a mother of a boy who has been here a while, with transplant complications, who also had CSA (cyclosporine) toxicity. Her son ended up having 2 seizures and she said the nuerologist recommended a new, but different drug than the dilantin, called Kepra (sp?). She indicated there were not the complications with Kepra in terms of keeping a balance between the dilantin and CSA levels, which if not within certain parameters could result in another seizure. Well, Gene asked the doctor about Kepra this morning and she thought it was a good idea, and will consult the nuerologist tomorrow. The intraveneous dilantin has been making him tired. He took a 5 hour nap today (assisted by benedryl), and has already called it a night.
Alex also had problems with one of his lines today. It was blocked. They gave the TPA which clears blood clots, but it didn't work. Since he was beginning on oral meds, through careful planning, they were able to give him his meds through one line. They were assuming it was the dilantin that had coated his line. They totally removed him from his morphine, because it was incompatible with some of the medications that had to be given through the one line. They said they would figure out what to do about the line tomorrow. Well, this evening a doctor from intervention radiology came in to see if he could try to clear the line, otherwise he said they would have to operate and replace the line. You should have seen Alex's eyes! That was not welcome news because he had had so much pain from the first operation. Lo and behold, the doctor tried to flush the line and met no resistence. The line was clear! Alex and I rejoiced!
We've decided on a HEPA air room filter. We made our decision by consulting an outside agency that objectively rates machines on their performance, effectiveness, and energy efficiency. We went with a more highly rated one than what you can find at a Home Depot. It costs a little more, but Alex's health (life) is worth it. Many air filters claim to do more than they do in reality. The filter is on order and it may take it a few days to arrive.
As I mentioned last night, I did go and visit a UU church this morning. The church I selected is in an area called Uptown. The congregation had outgrown their church and decided to move closer in to town than to the "burbs". They relocated into an old (historic?) Jewish Temple. The building is quite interesting, but it made me realize how much I enjoy our church building in Shreveport with its glass windows and constant connection with nature. The service was lay led and quite good. The people were very welcoming, and I stayed a little while for coffee afterword. I hope I have the opportunity to visit again.
After the biopsy tomorrow I will need to go back and clean the apartment--thouroughly, for when Alex comes home. I am excited and nervous about this step! However, I know how fortunate we are to be at this point.
We are blessed.
Sharon and Alex
Saturday, July 13, 2002 at 08:55 PM (CDT)
Day +18: Getting Back to Normal
Alex spent most of the day alert and in a pleasant mood. He still suffered from some dizziness and lack of balance, but it is getting better. The doctor indicated that was normal not only as a result of the seizure, but that the anti-seizure medication could also take some getting used to. They were supposed to start his cyclosporine today at a half dose and gradually increase it while keeping an eye on him. They hadn't started it as of 7:30 pm this evening. A mother of another boy undergoing transplant said the neurologist recommended a different anti-seizure medication, so we are going to ask about it in the morning. I crawled up beside Alex in the hospital bed today and we watched Joe Dirt and laughed and laughed, even though laughing didn't help his dizziness.
Alex's WBC was 1.9 (shortened for 1,900) which they said they expected to bounce around. His ANC was still above 1.0 at 1.7. Alex also took his first oral medicine today. That gets us a step closer to leaving the hospital! I'm still researching HEPA air filters. Checked out a couple of stores today. Still not sure what to get.
It's Saturday night so I'm going to make this a short entry. I had a nice walk around the University of Minnesota campus today and across the Mississippi. It's quite full from all the rain they've had. Tomorrow I'm thinking of checking out a local UU Church. Perhaps this place will feel like a second home before we leave.
Life is good. We are blessed.
Sharon and Alex
Friday, July 12, 2002 at 09:13 PM (CDT)
Day +17: A Quiet Day
Alex has spent most of the day sleeping off and on. He got some atavan early this morning for nausea. They said because of the amount of drugs they pumped in him yesterday, the atavan this morning, and the bodies natural response to sleep after a seizure would account for his day. The other side affect has been some dizziness and a lack of balance. Alex has needed assistance to get up or walk. The doctors indicated that it could take a couple of days for him to return to "baseline", which I guess means normal. Tomorrow they will restart the cyclosporine. I'm sure the day will go smoothly, but I know we won't want to take our eyes off of him.
Alex indeed did not remember the seizure, nor the MRI. All he remembers is that he was talking to the social worker and that she left to get Gene and the doctor. He also remembers that he kept changing beds, going from soft to semi-soft to hard, soft again, etc. I can't believe he remembers that but not the loud noises of the MRI. He also was disoriented in terms of time. He kept talking of events of yesterday and events of today as though they were one day. He was surprised when he realized he missed a day. He asked both Gene and I to go over the events a couple of times, curious about what really happened. He actually had a sense of humor about it all.
Alex's counts are still good. This morning his WBC was 2,900 and his ANC 2,400. His hemoglobin was 11,900. His plateletts were below 50,000 this afternoon so he received a transfusion this evening--meaning more benedryl and more sleeping. There is still no sign of GVHD. So the doctors are pleased. They are now planning to do his bone marrow biopsy on Monday--why it keeps changing I don't know. I think it will be several more days before we go home because Alex is not yet eating or taking oral meds. Also they reduced his methylprednisone yesterday. We'll just have to wait and see if it is enough of a reduction to affect his moods.
The highlight of Alex's day was his shower (but then again so was mine!). He had warm water! He's not showered that long since we moved in this room. I had asked/complained about the water temperature yesterday and they came and looked at it and agreed it was cooler than what they try to keep it at (it was only 102), and that other than checking the boilers there was not much they could do. Well they must have discovered something because it was definitely warmer. This will be a real improvement on Alex's daily quality of life. (How would you like to be feeling puny and then end your day with a cold shower?)
I can't say enough about how good the nurses, the doctors, the social worker and all the other medical personnel were in responding to our emergency. They were also extremely attentive in caring for us, and communicated to us clearly and quickly and gave of us their time. We're in extremely good hands--physically and spiritually.
We are blessed.
Sharon and Alex
Thursday, July 11, 2002 at 08:43 PM (CDT)
Day +16: A Big Scare
We had a big scare today. Alex had headaches this morning, continued high blood pressure, and upon waking from his nap this afternoon was dizzy, lightheaded, and had blurred vision. At about 4:00pm Alex had a 2 minute seizure. I was not there when it happened so I may not have all the details correct. Gene was there and the incident was quite traumatic for him. Fortunately there was a doctor and a nurse in the room at the time and a "code blue" was called and a full team was in there in no time. They said it was a very brief seizure, and that he was getting oxygen the whole time and that afterwards all his vital signs looked good. They gave him a couple of drugs which knocked him out pretty good. I arrived at about that time and they took him downstairs for an MRI. Boy was that MRI noisy! I had no idea. Upon examining the MRI, the doctors concluded that it was a classic case of cyclosporin (CSA) toxicity. The MRI also showed no signs of bleeding in the brain or permanent damage. They will be giving him Dilantin (sp?), an anti-seizure medication from now until a month past when they take him off the CSA. They will take him off the CSA for the next 2 days until the level of dilantin is sufficient and then they will restart the CSA. The CSA is an important drug and prevents GVHD.
The doctors were relatively unconcerned. They said approximately 5% of patients develop this toxicity and have a seizure but that over 80% will not have a second one. They also said this would not interfere with his discharge date. The possible side effects of dilantin are fatigue and liver damage. They said that once the CSA was discontinued and out of his system he would no longer be at risk for a seizure, that this is temporary, reversible. Alex will probably not remember the seizure and when I left this evening he was sleeping. They said he probably would sleep the rest of the day and night because of the medication they gave him (a big dose of atavan), and that the body naturally rests after a seizure.
Alex's stats for the day were just fine. His WBC was 2,400 this morning and 3,100 this afternoon. His ANC was 2,000. We expected these changes when they stopped the GCSF. Their only concern is if his ANC drops below 1,000. The doctors said he can even go outside in a wheelchair with a mask on if he wants.
Prior to the seizure I had been having a great afternoon with my Caring Partner volunteer, Pam. She took me out to lunch in a "New Urbanism" type of development--in the suburbs, of course. We then toured some parks around several lakes in Minneapolis to see if they would be good places that Alex and I could hang out. When we are discharged we will be rather limited on where we can go. But what I enjoyed the most was just having a woman friend to talk to about not just Alex, but our lives. Pam's just a wonderful person and I look forward to getting to know her better.
I'd like to take a moment to remember the Loggins family on the loss of Francis. The news saddened both Alex and I. We will hold you close to our hearts and carry you in our prayers.
We are blessed.
Sharon and Alex
Thursday, July 11, 2002 at 08:43 PM (CDT)
Day +16: A Big Scare
We had a big scare today. Alex had headaches this morning, continued high blood pressure, and upon waking from his nap this afternoon was dizzy, lightheaded, and had blurred vision. At about 4:00pm Alex had a 2 minute seizure. I was not there when it happened so I may not have all the details correct. Gene was there and the incident was quite traumatic for him. Fortunately there was a doctor and a nurse in the room at the time and a "code blue" was called and a full team was in there in no time. They said it was a very brief seizure, and that he was getting oxygen the whole time and that afterwards all his vital signs looked good. They gave him a couple of drugs which knocked him out pretty good. I arrived at about that time and they took him downstairs for an MRI. Boy was that MRI noisy! I had no idea. Upon examining the MRI, the doctors concluded that it was a classic case of cyclosporin (CSA) toxicity. The MRI also showed no signs of bleeding in the brain or permanent damage. They will be giving him Dilantin (sp?), an anti-seizure medication from now until a month past when they take him off the CSA. They will take him off the CSA for the next 2 days until the level of dilantin is sufficient and then they will restart the CSA. The CSA is an important drug and prevents GVHD.
The doctors were relatively unconcerned. They said approximately 5% of patients develop this toxicity and have a seizure but that over 80% will not have a second one. They also said this would not interfere with his discharge date. The possible side effects of dilantin are fatigue and liver damage. They said that once the CSA was discontinued and out of his system he would no longer be at risk for a seizure, that this is temporary, reversible. Alex will probably not remember the seizure and when I left this evening he was sleeping. They said he probably would sleep the rest of the day and night because of the medication they gave him (a big dose of atavan), and that the body naturally rests after a seizure.
Alex's stats for the day were just fine. His WBC was 2,400 this morning and 3,100 this afternoon. His ANC was 2,000. We expected these changes when they stopped the GCSF. Their only concern is if his ANC drops below 1,000. The doctors said he can even go outside in a wheelchair with a mask on if he wants.
Prior to the seizure I had been having a great afternoon with my Caring Partner volunteer, Pam. She took me out to lunch in a "New Urbanism" type of development--in the suburbs, of course. We then toured some parks around several lakes in Minneapolis to see if they would be good places that Alex and I could hang out. When we are discharged we will be rather limited on where we can go. But what I enjoyed the most was just having a woman friend to talk to about not just Alex, but our lives. Pam's just a wonderful person and I look forward to getting to know her better.
I'd like to take a moment to remember the Loggins family on the loss of Francis. The news saddened both Alex and I. We will hold you close to our hearts and carry you in our prayers.
We are blessed.
Sharon and Alex
Wednesday, July 10, 2002 at 10:34 PM (CDT)
Day +15: A Down Day
Alex just felt "blah" most of the day. He had a couple bouts of nausea and with the resulting medication, he did a lot of sleeping. I tried to remind him that he had had a couple of really good days in which he was active all day long, that he had stayed up late watching the All Star Game, and so his fatigue was not unusual. I told him that he was sure to have good days to look forward to.
Alex had another run in with a night nurse--apparently the floor charge nurse. He had his bed up high and apparently she wagged his finger at him and said in a disgusted tone that hadn't she told him before that he was not to do that and he was to put his bed down now. Well, with the steroids affecting Alex's perception of events, he got pretty upset. So Gene and I had various conversations with the morning nurses, the nurse manager, etc., and hopefully things have been worked out. In fact the nurse manager had stated that the charge nurse had approached her before she knew anything and commented that she had not handled the situation well. Apparently she is a great clinician, but is known for her poor bedside manner which is why she is on the Adult BMT unit and not the Pediatric unit. Tomorrow they lower Alex's methylprednisone (steroid). I will be interested to see if there is any change in his moods.
His counts were still good today. His WBC was 4.5 and his ANC was 3.7. Since he is no longer being given the G-CSF, it would not be unusual if it drops again tomorrow. His hemoglobin was really high, 11.7 from the two units of RBC's he got last night. His plateletts fell below 50,000 this afternoon, so they just started transfusing him now.
When Alex took his shower tonight he noticed that parts of his legs, feet and hands were red or rash like. The nurse and resident doctor both took a look at it. They thought it might be a skin rash associated with GVHD, but were uncertain. In the back of my mind I wondered if it was high blood pressure, since he had gotten a "sunburn" look several times before when it was high. Sure enough his blood pressure was up, the highest it has been since we've been in the hospital. This evening they have had to give him several injections since it is still on the high side. We'll just have to wait until the morning to see what his skin looks like to know what it was associated with. I'd prefer it to be the blood pressure of course!
Everyone is still treating us like we're going home. One of the nurses who we really like, Craig (he's the one that let Alex go without the benedryl for his transfusion last night so he could watch the game), does not have a shift again until next Friday. He came in to say good bye before he left because he thought we would be discharged by then. We will miss him.
I'm signing off hoping we have a good night nurse! If not, we haven't forgotten that still--
We are blessed.
Sharon and Alex
Tuesday, July 09, 2002 at 10:58 PM (CDT)
Day +14: More Smooth Sailing
Let's start with the stats. Alex's White Blood Count today was 4,400 and his Absolute Neutrophil Count was 4,000. Isn't that fantastic?! (By the way, I incorrectly posted yesterday's ANC. It was 2,900, not 1,900.) They stop Alex's G-CSF when his ANC is over 2,500 for two days. We hit that mark, so Alex did not receive any today. G-CSF is a growth factor, or "fertilizer" for white blood cells. The doctor said not to be surprised if as a result his counts decline. She said they may even drop in half. The key is to keep his ANC above 1,000. She said sometimes people will need a boost of G-CSF, and not to be dismayed if that happened. After tomorrow they will also begin to taper his methylprednisone. Mom is looking forward to that, since it's the medication that makes Alex irritable.
Alex's morphine was reduced slightly today. As a result he encountered a little more mouth pain, but he still has the option to hit the button if he needs it. He's showing more interest in eating, but it is still not working. His nurse said not to be surprised if it takes several more weeks for his tastebuds to return. This evening he also had a Red Blood Cell transfusion. We asked the nurse if he could go without the benedryl, so Alex could watch the All Star Game. The benedryl is used to mitigate an allergic reaction, and since he has not had one yet, the nurse gave him a pass. Do we have our priorities straight or what? In fact Alex spent 3 hours watching the Home Run Derby today that his Dad gratefully taped for him. Alex spent the morning watching the Travel Channel and the Food Channel just so he would not know the Derby results.
The doctor said that Alex's bone marrow biopsy will be scheduled for next Tuesday rather than Monday. It will be done in his room. They're still planning on us going home that day or the next. They have started to give us discharge information. I viewed a video today and more questions will be answered over the next few days. While the doctors say Alex is doing excellent they are always cautiously optimistic saying it would not be uncommon for us to still hit a bump in the road before we return to Shreveport. I am just thankful that we have made it this far without any complications. But it has put me into action. I went and purchased Alex a new pillow. His pillow was a feather pillow, and he can't be around feathers now. Next I will have to start shopping for a HEPA filter for the room. I'll have to come up to speed on the technical aspects of these filters, to make sure I get the right one and of course to make sure I get a good deal. I have no idea what they cost. The brochure says you don't have to do any special cleaning before Alex comes home, but knowing me I will. I'm sure psychologically it gives me a sense of control over the situation.
The chaplain, Julie, who led our transplant "blessing" stopped by today. We had such a nice conversation. She is a special person and I'm glad I had the chance to meet her. Pam, our Caring Partner volunteer, also called. We're going to meet for lunch and a small outing on Thursday. I'm really looking forward to that. It will be nice to do something with the company of a friend along. I've probably spent too much time inside my own head of late. She read my city planning entry, so we may go down to Nicolette Mall. I miss all of you--my family, my friends--some old, some new, some rediscovered.
We are blessed.
Sharon and Alex
Monday, July 08, 2002 at 10:04 PM (CDT)
Day +13: Is More Good News Boring?
Alex's WBC was 3000 today and his ANC 1,900! And he seems to be maintaining on his hemoglobin, but it may be a little early to conclude that. They say the plateletts are the last to come in. There are no signs of GVHD. The doctors are still talking about him going home next week after his bone marrow biopsy.
Alex has had no more nose bleeds. His mouth is slowly healing. He tried to eat ice cream last night and tonight. He didn't have a lot of pain, but he couldn't taste anything, so he said what's the use!
Alex walked the hallway with his Dad last night. He didn't care for it much because he has to wear his mask. He just hates wearing the mask, he says he gets clostrophobic and that it smells. I hope he gets used to it or our 2 months in the apartment will be long ones. Alex's teacher came by today. Alex is making slow progress on his Health unit. I hope that will pick up so he won't have to deal with that when we get home. His physical therapist also came by. He needs to start building his strength!
Today you can see a real change in Alex. His energy level is higher, he's doing more for himself, in fact he's asking me not to "help" him so much. I guess I have some adjusting to do too. The phone rang this evening and he literally dove for the phone. I can't remember when I saw him move so fast. He's been working hard on his fantasy baseball. He now has 9 teams lined up for the second season.
I went for a walk along the Mississippi River today. It's just a half block from the apartment, down a cliff. They've got a nice walking trail and they've left it in a pretty natural state. Being inside so much it was great to enjoy the outdoors and to have access to such a nice amenity. I hope to explore some of the area lakes before we leave. I haven't had a chance to check out downtown or Nicolette Mall, but want to do that, and perhaps a few "New Urbanism" developments. I've been admiring the design quality of some of the campus/hospital garages. Shreveport could learn from them. I found a garage yesterday, which was built into a hillside taking advantage of the grade change of the site. The entrance was to the side, not facing the street. Facing the street was a lush and beautifully landscaped hill, including a stairway leading to a plaza and the buildings at the top of the hill. It took me awhile to realize it was a parking garage. I guess I can never really ever leave my work. I just love cities!
Thanks to all of you the power of prayer is working!
We are blessed.
Sharon and Alex
Monday, July 08, 2002 at 07:40 AM (CDT)
Day +12: Optimism Riding High
This entry is for yesterday. I did not get much sleep Saturday night and so went to bed early last night.
I'll start with our extremely good news. Alex's White Blood Count was 1,800 yesterday and his Absolute Neutrophil Count (ANC- the "warriors" that fight bacterial infection) was 1,500. His counts are coming in! As a result the doctor removed him from two of his antibiotics. They have changed his TPN (intraveneous nutrition) from a 24 hour drip to a 16 hour cycle. They say that this should help to stimulate some natural appetite. I guess when the body is fed 24 hours a day, it doesn't send hunger signals to the brain. With the change in his TPN, they said he also would not need his insulin, that his body will be able to respond to the change in cycle.
What the doctor said next was the most unimaginable. She said not only could Alex walk the halls, but on day +21, when Alex has his bone marrow biopsy, he could be discharged and allowed to go "home", i.e., to Ronald McDonald House. He will of course need to make it through the next week without any fever or signs of GVHD. I'm a little scared to let the joy of this in, because I don't want to be disappointed if it doesn't happen. It's also scary to know that when he comes I won't have a nurse just down the hall if he gets a fever or some other symptom. I'll be responsible for making sure he gets all his meds taken, tracking blood pressures, etc.
When I left yesterday afternoon, Alex had not yet taken his trip down the hall. At the time we had planned to do this, Alex had a headache and was feeling tired. It perhaps was the two hours he had spent updating his fantasy baseball teams on the computer! We had also been up numerous times the night before with several nosebleeds and an extremely noisy night nurse. The doctors were not extremely concerned about the nose bleeding. If it happens again, they will give him thrombin to help clot the nose bleed. They believe it is mostly a result of the dry air in the room. They do not allow the filtered air to exceed 8% humidity. And about the nurse, I asked to have her removed from our care for the next night. The doctors were also not concerned with the swelling in Alex's knees. They said it was not much considering the fluids he's taking and that some of the tissues may leak as a result. This leaking could show up in various parts of the body, and that as he improves and starts walking around the swelling should diminish. Alex's mouth and throat are still sore, but he thinks they are a little better. It seemed to me that his mouth secretions were less, that he was not suctioning as much as the day before. Having his mouth heal will be the biggest change for Alex emotionally in this whole ordeal.
I am awed that we have made it this far, with no complications, just treating symptoms. If we keep it up we may be setting a new standard for an FA Unrelated BMT. Is it luck? Is it Alex's zen like attitude toward his disease? To me Alex has always traveled a path of not fighting the disease, but also not giving in to it. Or perhaps, more importantly, it has been all the prayers, healing energy, love and support we have received from so many. Thanks to each of you for helping us make it this far.
We are blessed.
Sharon and Alex
Saturday, July 06, 2002 at 10:32 PM (CDT)
Day +11: Engraftment Landmark Reached
We keep getting good news! Alex's WBC was 800 this morning and best of all his ANC was 500. They consider that as an official "landmark" of engraftment. If he maintains an ANC of 500 or more for 3 days, then they will officially consider Alex engrafted. At that time he will also be able to walk the halls. Alex is not as excited by that as I am.
Other than that great news, everything is as before. Alex's mouth and throat are still sore, he's still not eating, he has occassional nausea, he has minor nose bleeding, his knees feel swollen, he's still getting transfusions, and with all that, he still has the nerve to get grouchy. We're doing better. At least today he would tell me when he was grouchy and we would just agree to not talk to each other. It worked! I hope to discuss the nose bleeding and swollen knees with the doctor in the morning.
Alex did more today. He sat in a chair for two hours and watched a movie. He also spent literally hours catching up on his fantasy baseball. He took his Magic cards out too and has been organizing them and playing both hands of the game for practice. I'm glad to see some interest in these old favorites returning.
I got to speak with the home place 3 times today. It was nice to feel so connected. Sounded like they worked outside, relaxed in the pool, and then went to see the Swampdragons play this evening. In fact, they called us from the game! I can't believe Dennis has been able to get my Dad outside in the heat and humidity.
I spoke with two men today who have wives on the unit who have been through difficult struggles. Both of their wives have shown improvement. In our conversation, you could hear the joy in the small steps taken to regain a sense of normalcy. One man's wife has chronic GVHD but was given "home passes" the last 3 days to leave the hospital for short visits home (and to see her 3 kids). The other man's wife was also able to leave the room for the first time in 3 months, and had her (resperatory?) tube, or some tube, adjusted so that she could talk, again for the first time in 3 months. My prayers and hopes are with them. So far, in comparison, our transplant has been easy. And so,
We remain blessed.
Sharon and Alex
Saturday, July 06, 2002 at 08:55 AM (CDT)
Day +10 (Friday): Mood Swings
July 4 didn't turn out quite as I expected. Between the medication for nausea and benedryl for plateletts, Alex was never able to be "alert". On top of the fatigue, the steroids have finally built up and he was "honry" (sp?) as we say in the south. Alex had no interest in even trying to see fireworks from our window, let alone me talking or doing anything for him. Saturday morning was better, he was more rested, but still testy. The doctor said that it was definitely the methlyprednisone. Younger kids she said get uncontrollable, hit and throw tantrums (remind me to never let John take a steroid med unless absolutely necessary!), and teenagers verbally abuse their parents. She recommended taking a break from the room if it gets to be too much and to not take it personally. She said if everything looks good in 5 days or so they would start weening him from the methylpred, and to hang on. Alex also said his knee joints felt like they were swollen which means the methylpred may be causing him to retain fluid. His weight is up so they are going to watch that, and if indeed he is retaining fluid, they will give him a diuretic.
The good news is that Alex's WBC went up to 500. I don't know how far it needs to go up before they start counting the neutrophils, but that will be the next step to getting out of the room. There is no sign of GVHD, but they said that probably would not present itself until his counts were higher. The next month is the window to watch for the GVHD. The doctor said that as with other things--one day it's not there, one day it is, and that it will be obvious. The doctor's are just so pleased we've made it this far with no infections or complications. The rest of the day went fairly well. Gene was with him in the afternoon and when I checked in Alex had another bout with nausea, but the medication didn't knock him out all day, and Alex had two nose bleeds. I'm assuming those were not a big deal, but will ask the doctor today. It could be from the filtered air in the rooms. It is so dry!
The other big event of the day is that we shaved Alex's head. Alex's hair was everywhere, so he decided to just get rid of it. They use a shaver, not a razor blade, because they don't want to risk a cut. So it is not entirely smooth. Now his perfectly round head is bald. There appear to be some hair roots left though. Alex also tried to eat some ice cream. It hurt his throat too much, but the fact they he tried must mean that the pain is lessening. Perhaps in a couple days.
It sounds like Den, John, Mom and Dad are enjoying the holiday weekend and serviving the heat in the pool. I sure do miss them. Whenever I run across others with youngin's it brings a tear to my eye. I can't wait to see them in August. This separation has made me value all our family times, what a great family I have, and how much I look forward to being back together again. My family is one of my greatest blessings!
We are blessed.
Sharon and Alex
Thursday, July 04, 2002 at 07:16 PM (CDT)
Day +9: Counts Up!
Alex's white blood count went up to 300 this morning. That is more good news. No sign of GVHD, yet either. GVHD is when the donors' cells attack the recipient. There are two types of GVHD, acute and chronic. Acute GVHD is what "shows up" in the first 3 months. Chronic GVHD "shows up" after 3 months. GVHD can range from mild to serious, but in most cases GVHD can be treated. Alex is at greater risk for GVHD because he had an unrelated donor versus a related donor. We're not going to worry though about something that has not yet presented itself.
Alex has been a little out of it today. He has had some nausea and a platelett transfusion, so the meds have kept him dozing in and out. He's also been a little testy, he gets that way when he has to function when he's half asleep. Who can blame him. The hair is quickly coming out. He has scattered bald spots now. Craig, his nurse who shaves his own head, offered to shave Alex's head, but Alex was not quite ready to take him up on it. Maybe tomorrow. His blood pressure has also been elevated all day, and there trying to figure out the right balance of medication for that.
I got a chance to speak with Dennis, John and my Mom today. It was nice to connect with them on this holiday. They're going out to see the fireworks along Shreveport's Riverfront tonight. If my Dad can stand the heat and humidity I think he'll be quite impressed with the show. It is usually pretty good. They have fireworks along the riverfront here in Minneapolis, we're just not certain if we have the right view from our window, but we'll be looking. That's why I'm making this entry early. I also figure that since Alex has slept much of the day, he may be up late, and I may want to take advantage of spending some time with him.
Happy 4th of July!
Sharon
Wednesday, July 03, 2002 at 10:56 PM (CDT)
Day +8: Counts Double!
Alex's White Blood Count went from 100 to 200. We're excited! And hopeful that we keep moving in an upward direction. The sooner the counts come in, the sooner Alex's mouth and intestinal tract can heal. Dr. MacMillan said that when his Absolute Neutrophil Count(ANC) goes above 500, Alex can leave the room, and walk the hallways. She expecdts that to happen in 4 to 6 days. Alex picked up at the idea of being able to leave the room. The ANC is that part of your WBC that fights bacterial infection. So now they will be checking for signs of graft versus host disease (GVHD). Minor GVHD is not uncommon. She said it first shows as a rash on the hands and can spread to the skin. Diarrhea is another sign. We hope to avoid major complications from GVHD. I need to learn more about the ins and outs of this, and have a few questions to pose for the doctor. I showed the doctor a minor skin rash I had and asked if it was possible to have "sympathetic" GVHD. She got a laugh at that. I've been told it could be a sign of stress.
Today was a better day for Alex. No nausea, but still the mouth and throat pain. He was more alert and able to do exercises with Reggie, his Physical Therapist, and toss a tennis ball around. He also started up on the school work again. There was another big change--Alex's hair has begun falling out. The hair comes out in clumps. I will be interested in seeing him tomorrow to see if there is any left. We both have a curiosity about how he will look. It's one of the few side effects that doesn't cause discomfort. Alex is doing such a good job of doing all the things he is supposed to do, even when he is tired and not feeling well--school, mouthcare, daily showers, etc. I admire him!
Well, tomorrow is the 4th of July--Independence Day. I picked up a few things to make his room more festive for the holiday. It sure doesn't measure up to fireworks though. Alex loves buying a big bundle of fireworks every year and having a big blowout. Maybe next year. This holiday has special significance to my family. It is the time we have regularly gathered for reunions, and my sister Kathy's birthday. Best wishes Kathy!! We will particularly miss firworks on the Shreveport riverfront. Dennis, John, and Mom and Dad will have to save our spot for us.
Thank you to everyone for their generosity to Alex, especially those who do not know us. You've touched our hearts.
We are blessed.
Sharon and Alex
Tuesday, July 02, 2002 at 10:08 PM (CDT)
Day +7: Moving Day--Again
We have hopefully moved into our final resting place. We are now in the renovated Adult BMT Unit. The staff is glad to be back in their old stomping grounds. The rooms are nice. In addition to our window and shower, the room colors are warm and calming. Besides packing and unpacking, Gene and I spent some time decorating Alex's room. We're not done, but it is looking good. We found a good place to sit his stuffed gecko and snake. They remind us of home. For those of you who don't know, Alex has a pet leopard gecko and an albino corn snake. During our stay here they have been turned over to John to take care of. He has enjoyed taking on this important role. With the renovation, the hallways are also much nicer, and there is a sitting area and great view at the end of one hallway. This will be important when Alex can leave the room, but not the unit. The air for the hallways comes from the filtered air in the rooms, similar to the Pediatric Unit. That's not true for the public hallways.
Please note that we have a new room number and a new phone number. Do you like the change in the page. It is a new option on the web site and Alex said he preferred it. Personally I like more color, but black was always one of Alex's favorite colors. It's his page, so his choice.
Alex's day today was better than yesterday, but still difficult. We're having to find a balance between cutting the pain, preventing nausea, and maintaining some alertness. Alex awoke with some nausea, they gave him benadryl, and he seemed to have a real hard time rousing himself until 2:00 this afternoon. One thing that really helped today, is a suction tube they gave him for his mouth secretions. This helps in several ways. Both spitting and swallowing cause pain, so it helped to eliminate that, and it also helps with preventing the nausea by keeping the secretions out of his stomach. Swallowing causes the most pain, so much so that Alex could not take his oral blood pressure medication. His BP has been ok lately, so they're just going to watch it.
The good news for today is that they took the first white blood cell count today and his count is 100. Dr. MacMillan said that means Alex is beginning to engraft. As those cells grow they will help to heal his mouth, throat, and gastrointestinal tract. We just have to hang on. She also said not to be disappointed if the counts tomorrow are lower, that it is not unusual for them to fluctuate--but it wouldn't hurt to keep your fingers crossed.
Looking for a better day tomorrow and higher counts.
Goodnight,
Sharon
Monday, July 01, 2002 at 09:53 PM (CDT)
Day +6: A Bump in the Road
After numerous good days, we finally hit a bump in the road. Late last night Alex started to finally experience pain in his mouth and throat. They gave him some morphine, the pain continued this morning, they gave him some more morphine and then decided to put him on a continuous drip. The doctor said this was very normal and that the drip would provide a steady baseline of relief, rather than peaks and valleys of pain. He was also given a button where he could increase the pain medication as needed. They monitor the medication to where it is limited, to prevent addiction. The doctor said the sores and pain should go away when his white blood counts kick in. She said the average for FA patients is day +10. She thinks Alex is doing extremely well, especially for an FA patient because they tend to experience more complications on the whole.
Well, shortly after they put Alex on the drip, he vomited. His vomit included blood, which he spit up for a while. You can imagine what it felt like to vomit with a raw throat and mouth sores. They took a culture of the vomit to test. Good news was that Alex was not running fever so it is unlikely that it was a result of infection. Some of the bleeding was a result of a low platelett count. They were just about to give him plateletts (which help your blood to clot) when all this occured. They are also pretty sure that the blood was primarily from his mouth sores. I was glad of that. It was upsetting to see him spitting out blood. The doctors and nurses indicated that it was not unusual for morphine to result in nausea. They gave him medication for the nausea, but he was still having discomfort from reflux. Tomorrow they may try a new medication to better address that issue. We also found that if they raised the base rate on the morphine, so Alex didn't need to use the button, it helped. It was the sudden surge of morphine that was activating the nausea. What a choice for him to make--pain or nausea. As a result of today, they also raised his platelette parameter from a baseline of 10,000 to 50,000. So anytime it falls below 50,000, he will be transfused.
Let me just say that Alex did great. This was not easy on him. And if any of you have been through something similar in a hospital, you know there is always a pretty good gap in time between feeling nauseas, having the nurse check you out, having the nurse consult with the doctor, having the doctor check you out, then ordering the medicine, receiving the medicine and then giving it to the patient. Alex did a great job of withdrawing into himself and "focusing" to get himself through this, because the last thing he wanted was to throw up again.
He finally fell asleep from the benadryl given with the plateletts. I finally took a break from the room, returning later this evening for a quick visit. Alex still didn't feel like talking, but he was back to playing cards with his Dad and we played a few games of Speed before I left.
Having Gene here has been a lifesaver. I can't imagine how either of us could have done this alone. We're going to try to do a schedule of 24 hr. on and 24 hr. off (1:00 pm to 1:00 pm). That way we each get to experience hospital food and a less than ideal bed. (We now have a bed that flips down at night and leans back up against the wall during the day. It is much more comfortable than the futon.) I stayed around a little longer today, because of Alex's difficulties--he wanted us both there. I'll go over a little early tomorrow too, because it will once again be moving day. We got a peak at our new room. It will be spacious, with a bathroom and a window, so no complaints. The window view is not as great as we have now, but the unit has a shower that family members can use--so that's a fair tradeoff. I don't know if I mentioned to you that in addition to washing our hands upon entering the room, we cannot use Alex's toilet or shower. The restrooms are not that close to the unit and you have to go upstairs to find a shower. Not exactly convenient.
I want to take a moment to thank the nurses, aides and doctors overseeing Alex's care today. They were responsive, compassionate, encouraging, knowledgeable, and worked hard to find a solution to address Alex's condition so he could be comfortable. I've also met two other families on the unit, whose loved ones have been here for some time. Send them your prayers as they and their loved ones move through their long recovery. Since undertaking this journey, I am continually shown the "face of God"-- his/her presence is everywhere! While difficult, this experience has been a gift.
We are blessed.
Sharon and Alex
Monday, July 01, 2002 at 09:53 PM (CDT)
Day +6: A Bump in the Road
After numerous good days, we finally hit a bump in the road. Late last night Alex started to finally experience pain in his mouth and throat. They gave him some morphine, the pain continued this morning, they gave him some more morphine and then decided to put him on a continuous drip. The doctor said this was very normal and that the drip would provide a steady baseline of relief, rather than peaks and valleys of pain. He was also given a button where he could increase the pain medication as needed. They monitor the medication to where it is limited, to prevent addiction. The doctor said the sores and pain should go away when his white blood counts kick in. She said the average for FA patients is day +10. She thinks Alex is doing extremely well, especially for an FA patient because they tend to experience more complications on the whole.
Well, shortly after they put Alex on the drip, he vomited. His vomit included blood, which he spit up for a while. You can imagine what it felt like to vomit with a raw throat and mouth sores. They took a culture of the vomit to test. Good news was that Alex was not running fever so it is unlikely that it was a result of infection. Some of the bleeding was a result of a low platelett count. They were just about to give him plateletts (which help your blood to clot) when all this occured. They are also pretty sure that the blood was primarily from his mouth sores. I was glad of that. It was upsetting to see him spitting out blood. The doctors and nurses indicated that it was not unusual for morphine to result in nausea. They gave him medication for the nausea, but he was still having discomfort from reflux. Tomorrow they may try a new medication to better address that issue. We also found that if they raised the base rate on the morphine, so Alex didn't need to use the button, it helped. It was the sudden surge of morphine that was activating the nausea. What a choice for him to make--pain or nausea. As a result of today, they also raised his platelette parameter from a baseline of 10,000 to 50,000. So anytime it falls below 50,000, he will be transfused.
Let me just say that Alex did great. This was not easy on him. And if any of you have been through something similar in a hospital, you know there is always a pretty good gap in time between feeling nauseas, having the nurse check you out, having the nurse consult with the doctor, having the doctor check you out, then ordering the medicine, receiving the medicine and then giving it to the patient. Alex did a great job of withdrawing into himself and "focusing" to get himself through this, because the last thing he wanted was to throw up again.
He finally fell asleep from the benadryl given with the plateletts. I finally took a break from the room, returning later this evening for a quick visit. Alex still didn't feel like talking, but he was back to playing cards with his Dad and we played a few games of Speed before I left.
Having Gene here has been a lifesaver. I can't imagine how either of us could have done this alone. We're going to try to do a schedule of 24 hr. on and 24 hr. off (1:00 pm to 1:00 pm). That way we each get to experience hospital food and a less than ideal bed. (We now have a bed that flips down at night and leans back up against the wall during the day. It is much more comfortable than the futon.) I stayed around a little longer today, because of Alex's difficulties--he wanted us both there. I'll go over a little early tomorrow too, because it will once again be moving day. We got a peak at our new room. It will be spacious, with a bathroom and a window, so no complaints. The window view is not as great as we have now, but the unit has a shower that family members can use--so that's a fair tradeoff. I don't know if I mentioned to you that in addition to washing our hands upon entering the room, we cannot use Alex's toilet or shower. The restrooms are not that close to the unit and you have to go upstairs to find a shower. Not exactly convenient.
I want to take a moment to thank the nurses, aides and doctors overseeing Alex's care today. They were responsive, compassionate, encouraging, knowledgeable, and worked hard to find a solution to address Alex's condition so he could be comfortable. I've also met two other families on the unit, whose loved ones have been here for some time. Send them your prayers as they and their loved ones move through their long recovery. Since undertaking this journey, I am continually shown the "face of God"-- his/her presence is everywhere! While difficult, this experience has been a gift.
We are blessed.
Sharon and Alex
Sunday, June 30, 2002 at 10:39 PM (CDT)
Day +5: Ice Cream
The day started off with a transfusion of plateletts and benedryl, which caused Alex to be groggy as usual. Alex's plateletts were at 4,000--after the transplant 33,000. I was looking over the calendar they gave us before we were admitted and they indicated between now and day +14 that it would be possible to have mouth sores, hair loss, fatigue, frequent transfusions, and of most concern, fever and infections. By day +14 we should expect new white blood cells to start growing, confirmed by blood tests. At that point we watch for signs of GVHD, fever and infection, and reactivation of CMV. The bone marrow biopsy is scheduled for day +21, or July 16th--only 10 more days!
Other than being groggy and a little grouchy our day was unremarkable. Alex's insulin is maintaining, so now they only have to take a blood sample every 4 hours versus every 2 hours. That will improve nighttimes. His high blood pressure seems to be under control too. The day was mostly filled with LOTS of Gin Rummy and Speed. This evening Alex and I also watched the movie, The Replacements. It was a lighthearted movie that drew a few laughs from us. I do love Alex's laugh--it's always so genuine. The more interesting thing happening is that Alex actually put food in his mouth yesterday and today. Not very much, but at least something. Last evening he had a cup of vanilla ice cream and this evening he had a slightly larger cup of chocolate mint ice cream. He also tried some of the noodles with my dinner, but it hurt his throat. Maybe tomorrow will try a pain killer prior to eating and then see if he eats a little more. As a parent it's strange to see your child not eat anything day after day, even if they are on intravenous nutrition. Feeding my children has always seemed like the front line in my responsibilities.
I miss touching my son. We're certainly allowed and I do, but not as much as usual. I've become so germ conscious, with all the hand washing. I try not to breath into Alex's face too much, so I don't breath germs on him. I am self-conscious if I thouch his hands, too--asking myself if I have germs on my hands. I look forward to more normalcy in our lives.
Alex is tired and wants to turn the lights out.
We are blessed.
Sharon and Alex
Saturday, June 29, 2002 at 10:25 PM (CDT)
Day +4: Boredom (?)
Another good day, we're enjoying the space in our new room, but boredom is beginning to set in. The doctor's remind us that boredom is a good thing during transplant. It's been good to see Alex get up and move around. The new room helps to promote that. He sat on the window ledge and soaked in some sun today. Yesterday, he sat in a separate chair for quite a while and began to do some school work. We're trying to see if we can complete his Health unit so he doesn't have so much to catch up on when we return to Shreveport. We're also trying to read Silas Marner, but that is not an easy task. Alex likes having his own shower in his room, it was much warmer, he actually hummed a little last night during his shower. It is amazing how something as simple as hearing my son humm, brings me such pleasure.
Medically, today Alex received a unit and a half of red blood cells. He will get an RBC transfusion anytime his hemoglobin falls below 8.0. He will get a platelett transfusion anytime they fall below 10,000. They still are taking glucose checks every 2 hours and adjusting his insulin accordingly. He hasn't had any more headaches! He's still not eating, his mouth is more tender, but not painful.
Where do we go from here? My understanding is that for the next 1 1/2 weeks we're mostly looking for mouth sores--which can be painful, but can be controlled with morphine and are temporary, and for any signs of infection--none so far. On day +7 they will start taking white blood count readings to determine if the transplant appears to be engrafting. They say they do not expect to see a meaningful WBC though until day +10 to +14. The only real determinant of whether there has been engraftment, is a bone marrow biopsy which is scheduled I believe for day +20 or +21. I'll check my calendar tomorrow. At that point the doctors will be looking for three things: continued growth in Alex's WBC count, infection, and graft versus host disease. Assuming all goes well, in an additional 2 weeks we would become outpatients. We would stay in Minnesota for a minimum of 100 days post transplant.
Again, we continue to be amazed by the circle of community caring out there rooting us on. Your prayers and healing energies have become quite a force. Thank you for allowing us to be the receipients.
We are blessed by God and our larger community of friends.
Sharon and Alex
Friday, June 28, 2002 at 02:30 PM (CDT)
Day +3: Moving Day
Overall we can't complain. Things are still going well for Alex. The doctors are pleased with his progress and not expecting major changes over the next several days. His glucose continued to bounce around, exceeding several times the parameters they had set (over 250). Last night they put him on an insulin drip, and will monitor him every 2 hrs. until he is stabilized or they get the right dosage. One nurse explained that basically the medications will cause BMT patients to produce more glucose, but that Alex's pancreas cannot produce enough insulin to process the extra glucose, so the drip helps him out. This is particularly not atypical for Fanconi Anemia patients, in that their organs often don't respond as well. They indicated that this should be temporary and by no means does it mean he will be diabetic. However, diabetes is also not uncommon in those with Fanconi Anemia. Alex has also had headaches the last 3 afternoons, which when treated with a little morphine wipes them away. When I see the doctor I'll ask if there is a pattern to this and anything that could causing it. Outside of that the big news is that they moved us into the temporary Adult BMT unit. Please note that the room number and phone number has changed. I have posted the new information on the main page. We now have a sizeable room, with a window and shower in the room. It feels great! We can't get too settled in because we will be moving again on Tuesday to the new, remodeled Adult BMT wing. So, I'll be sure to post our new phone number when we reach our final resting place. The most difficult part about the move is leaving the excellent nurses in the Pediatric BMT wing who had begun to become friends. I'm sure we'll develop friends over here soon too. Can you believe we've been in the hospital 11 days already?!!
Mom and Dad left at noon today, flying south to Shreveport. Pam Cummings took them to the airport. She has been a great support and friend to us. I had planned to do the dropoff myself, until I found out about the move yesterday. Alex had such a good time with his grandparents. They got an opportunity to play lots of cards, and laugh out loud with each other. Gene stayed with Alex again last night so I could spend additional time with them. That was very generous of him. It was great to have my parents here. I was sad to see them go. I am grateful to them for coming and giving up a month of their time to go to Shreveport to help out with Johnny. It takes the stress off of me to know the homefront is taken care of. However, I don't know that Alex will have as much fun beating me at cards!
The only thing to do now is wait. Let's hope it stays boring and there is not much for me to report. I want to wish my dear brother Warren a belated happy birthday.
We are blessed.
Sharon and Alex
Thursday, June 27, 2002 at 08:57 AM (CDT)
Day +1: Hellos and Goodbyes
Yesterday we had to say goodbye to Dennis and John Wesley. Got lots of big hugs before they left. We're sure gonna miss them. I think the trip will help JW in understanding where Alex and I live during this extended time away from home and what Alex is going through. It will give him a place to relate to when we talk on the phone. He's also going to look forward to coming back, because he had so much fun playing ball and racing the manual "go carts" in the gym at the RM House. Dennis also got to spend some quality time with Alex. So, all in all, their visit went really well. Pam Cummings, our Care Partner volunteer, took the two guys to the airport. She has been just wonderful to us. Made us some great brownies that we've all been snacking on, particularly my Dad. And low and behold it appears my Dad and she have something in common. Apparently my Dad worked as a college student for a lumber company in the same small town in Montana that Pam is from, and her family owned a logging company at that time. I'm sure they'd like to compare more notes.
Upon Dennis and John's departure, Gene, Alex's father arrived. Alex was sure glad to see him. Gene got settled into his apartment and spent the evening and night with Alex. I have yet to call over and see how the night went. I know the sleeping accomodations leave a little to be desired especially, for someone who is 6'6". But it was a nice break for me and gave me a chance to go out to dinner with my Mom and Dad. We went back to that really nice restaurant Dennis and I ate at--had a great meal. John Devine, "our" saxophonist, was playing again this time along with a bass cello and drums. The music was great and it gave us another opportunity to thank Mr. Devine (Isn't that such a great name?).
Alex did well yesterday. He played lots of cards--taking us all on--me, Mom, Dad, Gene, and even Carl, a volunteer on the unit who came by. He enjoyed it. Medically, he was given plateletts in the morning. He was at 6,000 and they want to keep his plateletts above 10,000. They give him benadryl whenever he gets blood product to prevent an allergic reaction. The benedryl not only makes him sleepy, but makes him jumpy too, so this time we tried a 1/2 dose, and that seemed to work better. During the day, he got a headache once again, treated with morphine, and it went away. He had a little nausea--he had removed his motion sickness patch, so they put that back on and it worked. His blood pressure was a little high, but medication brought it down. His glucose is running high again. We'll find out today, if they will be giving him insulin, changing his intraveneous nutrition formula, etc. (Alex is still not eating-no appetite-but they say that is normal.) Mouth sores continue but are not painful yet. I'm keeping my fingers crossed. Alex is doing real well with his mouth care. I'm proud of him. Yesterday he also got his G-CSF, or growth factor, which they call fertilizer for his cells to grow. Here's hoping it does the trick! The doctor did not get in to see Alex until later in the afternoon. He commented that he keeps thinking he will get by earlier in the day to see us, but has not managed to do so. He said that is good though. That means that things are "relatively" uncomplicated for Alex, that he has had to spend time with other patients, and that he could afford to wait to see Alex later in the day. I know my Mom and Dad have been pleased to see how good Alex looks and that he has been himself while they've been here. They were expecting it to be worse.
I'd like to take a moment and say how wonderful the nurses, staff and overall care is here at Fairview University Medical Center. Most everyone is so knowledgeable, personable, and compassionate. They truly want Alex to get through this with the least amount of discomfort as possible. They really try to clue in to his desires and needs. They also make sure he is taken care of fully. He had a little testing done by an occupational therapist, to make sure his fine motor skills, visual skills, etc., are monitored. His physical therapist, Wendy, also came by and had him do some more exercises. Just the interaction of these individuals, breaks up the day, and show Alex that there are many involved in seeing him recover. It's just amazing! I have been so impressed and feel that we are in the right place and in good hands.
It's time to get on with the day. Thanks for letting me ramble a bit each day. I've surprisingly discovered that the journal has become one of my coping outlets.
We are blessed in so many ways.
Sharon and Alex
Tuesday, June 25, 2002 at 08:51 PM (CDT)
Day 0: Transplant Day!
First I apologize for not updating this sooner. Bedtime the last couple of nights has been 11:15 pm and I was just too tired. My parents have been keeping me up past my bedtime!
I also apologize that my last entry was a little confusing, again due probably to fatigue. The good news is that Dennis spent the last two nights with Alex, allowing me to catch up on sleep, and better yet Alex no longer has to get up every 2 hours.
I believe I made a medical error by calling cyclosporin an anti-fungal. I believe its primary function is to prevent GVHD. Alex is also on Itracanozol, which is an anti-fungal. Please know that I am a lay person and that I will often make mistakes in how I convey to you what Alex is undergoing medically. I simply can't believe all the medications they are pumping into his body between the protocol, pre-meds to prevent side affects, and then meds to address symptoms.
Sunday, for Alex was no better than Saturday. He basically spent the entire day nauseated. They tried various medications, including a patch for motion sickness. They finally gave him Atavan, an anti-depressant, which eventually got rid of the nausea, but doped him up the rest of the day. His Hickman Line got "sluggish" during the day and that evening they had to inject a med to remove a clot. His blood pressure was also a little high so they gave him medication to bring that down. High blood pressure is a side effect of CSA. On Monday, Alex felt pretty good most of the day. He played cards, laughed, and visited with Grandma and Grandpa. It was so good to see the Alex we all know. The last several days he hasn't been eating so they put him on TPN, which is intraveneous nutrition. He is also starting to get mouth sores, they're kinda gross, but thankfully they don't hurt yet. That will in all likelihood come though.
And now Transplant Day--
Alex felt "ok" today. The nausea has not returned. He has more mouthsores, they don't hurt, but they don't make him feel like talking. We had a wonderful little celebration for him at 11:00 this morning. We had for Alex a surprise guest tenor saxophonist. Believe it or not, on Monday night, Mom stayed with Alex and Dad watched John and Dennis and I got to spend some time alone and went out to dinner. We found this wonderful little "swanky" place nearby, and as we were talking and trying to figure out what we could do special for transplant day, a lone tenor saxophonist stepped up on this stage and played a set. Dennis asked him if he would come play at our celebration and he agreed to do it. So anyway, at 11:00 the Chaplain and saxonphonist (John Devine) arrived. John played a tune from Willy Wonka, and then the chaplain conducted a brief ceremony, with a great Sufi reading. We then had a chance to make comments and to annoint Alex with a blessing using oil. We followed with a prayer and more saxophone music. It was quite special. I believe it allowed Alex to truly take in how much he is truly loved. The transplant itself took place at 2:00. It was like getting a blood transfusion, but happened rather quickly. We took pictures, and I found it to be exciting and hopeful. And then much to our surprise, this evening Alex received what they called an "Add-Back", which were some additional T-Cells that they were able to spin-off the donated marrow as they continued to process it.
I would like to take a moment to give particular thanks to Alex's donor. The donor chose to freely give a gift of life to someone else. I, my family, and Alex will be eternally grateful. I look forward to the day when I can personally thank him/her. This donor will literally live on in my son. For example, Alex's blood type is O+, but will become A+. I would also like to thank all of you if have supported us in large and small ways. We feel like we have been embraced by a community much larger than we could have anticipated. You have shown us that the world is a very giving and loving place. We are humbled by the "face of god", reflected in each of you.
And now the waiting begins. It will be a period of about 2 weeks, before we get a sense of whether the transplant has engrafted. The goal will be to keep Alex free of infection in the interim.
Tomorrow Dennis and Alex return home to Shreveport. It was so good to see them and spend family time together. We will miss them. Mom and Dad will stay here through Friday and then leave for Shreveport to help out with John. Gene, Alex's father (Dennis is Alex's stepfather, for those of you who may not know) will arrive tomorrow and will be staying for a month. It really takes two to pull hospital duty day after day.
Well, once again, it is late and there are still some personal care activities for Alex to attend to. It was a great day! As always,
We are truly blessed.
Sharon and Alex
Sunday, June 23, 2002 at 08:30 AM (CDT)
Day -2: The Good & The Bad & Back in Business
I took a day off, and when I tried to make an entry yesterday the web site was down. It is early Sunday morning, Alex is still sleeping, so we don't know yet what the day holds.
I failed to mention that Alex received on Friday, in addition to his chemo, that just lies "dormant" in the blood stream. It is one of the herpes complex set of viruses. These viruses can be "reactivated" when Alex's immune system is eliminated. Acyclovir is a drug to try to prevent or minimize this. Similarly, Alex also had chicken pox when he was little so it to could be activated and present itself as shingles. He will be receiving the Acyclovir for awhile. On Saturday a new drug was added to his protocol, Cyclosporine. It is an antifungal that is also supposed to prevent graft versus host disease. Today will be our last day of chemo.
Well Friday was a great day. Alex felt relatively good all day. Ate a little more. We read, played cards, he joked on the phone with his sisters, and he did a few exercises with the Physical Therapist. Dennis, John and I started decorating Alex's room a little bit. We were also able to have a volunteer come into the room for a little bit so Dennis, John and I could have dinner together and then we went back to the RM House, and I was able to show them around a little better.
His day started out with a Red Blood Cell (RBC) transfusion because his hemoglobin was low. However, his glucose level was back in the normal range so that was good. He felt fine and ate a bowl of cereal for breakfast, but shortly afterwards he started having tremendous stomach pain. He eventually had a bowel movement (his first since last Sunday), but the pain persisted. They gave him some medication that made him sleep a bit. When he got over that he experienced nausea off and on the rest of the day. Again more medication that helped with the nausea, but more sleeping. He didn't eat anything else the rest of the day. They may soon put him on what's called TPN. I have forgotten what that stands for, but it is a supplemental nutrition through the blood stream. His glucose level is still ok today they said. We'll just have to see how it goes with the nausea.
Yesterday, Dennis and John went to the zoo. Dennis said it was not the best zoo he's been too, but that he and John had a great day together. They picked up some Chinese food and we had dinner together in the lounge. Dennis sat with Alex for awhile, giving me a chance to be with John. We did a bit of rough housing in the lounge. It was so good to be able to laugh together. Today, Dennis is going to come sit with Alex awhile so I can have some additional time with John. Wouldn't you know it though, it's raining outside. So far Alex has wanted me to spend the night. I know we do his shower routine at night and we've probably just developed a system and that caretaker bond that makes him feel comfortable. Our days sort of remind me what it was like following child birth. Lots of quite moments, followed by anxious moments, frequent wakings at night, but something that you just do and before you know it your used to it and its not too bad.
My Mom and Dad arrive this evening. I am sure looking forward to seeing them. I guess you're never too old to be parented. My parents will be here until Friday and then they will go down to Shreveport for a month to help Dennis out with John. I feel fortunate that my parents are able to help us out in this way. I'm hoping while they are here, maybe Dennis and I can get some time to be together, just the two of us. I really miss that.
Well, Alex is arising. I best tend to him and we'll see what the day holds. Transplant Day will be here before we know it. It's hard to comprehend sometime that we are walking further down this road each day.
Blessed are we.
Sharon
Thursday, June 20, 2002 at 10:40 PM (CDT)
Day -5: Dennis and John Wesley Arrive!
Overall it's been a good day. Just a couple of roller coasters. Alex sure did enjoy waking up with the nausea gone and feeling ok. He got calls from both his sisters and Dad and was joking around a lot with them.
His chemo was started this morning. With the Cytoxan he has to get up every 2 hours to urinate because it can irritate his bladder. They have given him plenty of fluids, so that has not been a problem so far. After lunch they gave him the ATG which suppresses the immune system to prevent graft versus host disease (GVHD). It is a pretty powerful drug that can have side effects (which of course they all do), and they gave him some drugs to prevent them. At one point he got a bad case of the chills and then gave him demarol to take care of that. That made him nauseas for just a minute, and then put him to sleep. All was fine after that until bedtime when Alex got nauseas again. They gave him something to take care of that, and he is now sleeping.
Dennis and John arrived about 6:15 pm. It was so good to see them. John arrived dressed as a true cowboy--complete with a new cowboy hat purchased in the Dallas airport. We all sure enjoyed giving each other hugs. John was real gentle with Alex. He wanted to be shown around, not quite understanding there was nothing to show him. I had a volunteer come and stay with Alex so I could show Dennis and John aroung the Ronald McDonald House, before returning for the evening with Alex. I'm looking forward to more time with Dennis and John in the days ahead. We'll have to find some family activities for John while he is here.
Well, it's very late and I need to get ready for bed. We treasure our family!
Blessed are we,
Sharon
Wednesday, June 19, 2002 at 09:21 PM (CDT)
Day -6: Radiation and Nausea
Today is Day -6, 6 days before Transplant. Transplant day is referred to Day 0.
Alex is still tender with his Hickman Line, but it is getting better. At 10:15 today he received his 20 minutes of radiation. That was followed by bouts of nausea. Alex has vomited 3 times, but they've worked hard to keep him comfortable. They were not exactly sure what the cause of the nausea is. It could be from yesterday's anesthesia, something he had prior or the radiation. They usually don't have such a quick response, but it's not impossible. He has also been tired and had a lot of saliva, which is a side affect of the radiation. At one point he ran a temperature of 100.6. Whenever a fever runs over 100.5 they culture the blood, take a chest x-ray and give him broad spectrum antibiotics. Tomorrow Alex will be getting his chemo, a set of 4 drugs-- Cytoxan, Fludarabine, ATG, and Methylprednisolone. We'll see how it goes from there. We're trying not to predict whether things will be better or worse. I told Alex we'd simply face it when it comes.
Because we are now in the process of destroying Alex's marrow, we have begun our hand washing routines and having Alex wear a mask when we leave the room. It's not too bad, and I'm sure it will just become a matter of routine.
We had a few visitors today. A physical therapist who tested Alex's strength for a baseline, the woman who works with him on his schoolwork, trying to make progress where we can, the chaplain and Pam Cummings, our Caring Partner Volunteer. She brought a few things to decorate Alex's room (baseball themed), and she will be picking up Dennis and John Wesley at the airport tomorrow. Alex and I are so looking to having our family around. We have missed them so.
We thank all who have reached out to us. It give both of us strength to move forward.
We are blessed!
Sharon
Tuesday, June 18, 2002 at 09:50 PM (CDT)
Our New Home
Well, we've been admitted to the hospital. Our phone number is 612-273-0376 and we are on Unit 4E. The room is a bit small and we do not have a window, but we're going to set about trying to decorate it to make it homier.
Alex had his Hickman Line surgery at about 10:45 am. He had a little more pain than either he or I expected, and has been out of it most of the day, but the pain seems to be getting better. Tomorrow morning he receives his TBI. It will take about 20 minutes. No turning back from there! He will not probably have any side affects tomorrow, so it should be a good day for us.
The staff here has so far been extremely nice. They liked Alex's movie video choice--Monty Python's In Search of the Holy Grail. We'd like to see if we can laugh our way through Alex's BMT. So feel free to pass along the jokes.
Blessed are we,
Sharon
Monday, June 17, 2002 at 10:47 PM (CDT)
More Cards, More Baseball
Well, we've enjoyed our last two days of "freedom". We spent Sunday sleeping in, went to Best Buy and got another game, went to a card game store and hung out for awhile and then Alex and I went and saw the movie Spiderman. We cooked for ourselves at the "House", and then watched the Yankees game.
Today, we went in, had a blood test and met with Dr. MacMillan. She's the BMT doctor we met with in October, and she has an expertise in FA. Both Alex and I like her. Alex's ANC had risen, and so he didn't need any additional G-CSF. We were done by late morning. We spent the day cleaning our room thoroughly, because it needed it, and before company arrives later this week. We then went to another card shop and Alex purchased some more Magic cards. Each of the stores we've gone to here have had Magic tournaments going on. It has almost made Alex wish he lived here. Afterwards we went to the St. Paul Saints baseball game--a minor league team.
Tomorrow we enter the hospital. Alex has surgery to have his Hickman line (chest catheter from which he will receive his medications, nutrition, blood draws, etc.) put in at 8:30. Afterwards he will be taken to his room on the pediatric bone marrow transplant unit. Nothing else should happen tomorrow, just getting settled in. On Wednesday, he will receive his total body irradiation (TBI). We're getting ready to "walk through the fire". And we're prepared and confident!
Blessed are we,
Sharon
Sunday, June 16, 2002 at 10:51 AM (CDT)
Road Trip--
Alex and I enjoyed our road trip yesterday to Duluth. It was a little over 2 hours to get there. It was interesting looking out into Lake Superior and just seeing water as far as the eye could see. We went to a park along the shore, the day was sunny, a little cool, but pleasant. The shore line was rocky with rocky beaches--and great skimming stones. So we spent most of our time skimming rocks, looking for interesting rocks to bring home with us. Previous visitors had erected rock "totems", so we decided to build our own to add to the collection. Alex decided to use more than just rocks, and added other elements--metal, bone, flowers, etc. We thought when he gets out of the hospital we should take another trip up and see if our totems are still there. We also went down to Canal Park, a waterfront, touristy area. We walked around the waterfront, ate dinner at Red Lobster (Alex had the Ultimate Feast), and saw an Omnimax movie, Shackleton's Antarctic Adventure--which was all about persistence, staying positive in the midst of adversity and hopelessness--quite appropriate for us to see.
Today we're going to do a few chores, go to a card game store for Alex, and see the movie Spiderman.
To all you father's out there, including grandfathers, uncles, etc., Happy Father's Day. We miss being at home to personally wish Dennis and Gene, Alex's fathers, a great day. Dennis is doing a great job holding down the homefront and caring for John Wesley. We can't wait to see them next week when they come for a visit.
It's a beautiful day in the Twin Cities. We're off to enjoy!
Sharon and Alex
Friday, June 14, 2002 at 10:48 PM (CDT)
Tests are done!
We met with the doctor today and everything is a go for the transplant. Alex will be admitted on Tuesday, following surgery for his Hickman Line (chest catheter).
However, we did find out that the success rates for Fanconi Anemia (FA) unrelated bone marrow transplants have declined from 86% to 75%. This was not good to hear, but the results are still based on a small population and could be skewed in either direction. We do know that Alex needs to move forward with this procedure now. In fact his ANC, absolute neutrophil count, has declined, exposing him to infection.
I will post our phone number when we are admitted. Also note that Alex cannot receive any flowers, plants or fruit.
The weekend is ours. Tonight we went to the Mall of America. At Wizards of the West Coast, Alex got to watch a tournament of Magic: The Gathering, which he likes to play. So he had a lot of fun and learned a few moves. Tomorrow we are taking a road trip to Duluth, to see Lake Superior, hike and enjoy ourselves.
Alex continues to amaze me. He has such a positive attitude and easy going nature about everything ahead.
I know we have not responded to the many communications in our guestbook. We have been a little on information overload and have been tired at night when we check in. But please know that Alex reads each and every one and looks forward to them.
It's very late. We'll try to fill in more information over the weekend.
Blessed are we,
Sharon
Tuesday, June 11, 2002 at 05:12 PM (CDT)
Beginning of Tests
We have had a busy two days filled with tests, waiting, answering questions, meeting people, and learning our way around the hospital campus. We didn't finish until 6:30 pm yesterday, and started at 7:00 am this morning. Because they didn't perform something they were supposed to do yesterday, we have to go back at 7:30 tonight to have Alex drink a liquid and then have the test performed at 8:30. These tests, because many require abstaining from eating have really messed with our mealtimes.
So far, we have met the folks in the BMT Clinic, had blood drawn both yesterday and today, had a consultation on what to expect from the TBI-Total Body Irradiation, had a consultation on Alex's Hickman Line Surgery-a line they place into his jugular artery that he will receive all his meds through, had a chest xray, an EKG, a CT scan of his chest and sinus (his abdomen and pelvis will be done tonight), a liver function test, an echocardiogram, a pulmonary function test, and I had a Caregivers Orientation class.
Alex, as always is going through it all like a trooper, just rolling along, even after our radiation consult that was quite sobering. They went over both short term and long term side effects. Alex will be receiving 450 Centigrays(?). Short term we can expect mouth and throat sores, a skin "sunburn", nausea, loss of hair, diarrea, dry mouth, and jaw soreness. Alex took the information in, but he said he would worry about it when it happens, that he can't do anything about it now. He's amazing!
There has been a minor change to our schedule. Hospital admission day is now scheduled for June 18th instead of the 17th. Transplant Day is still the 25th.
I'm going to close now. Alex is jumping at the bit to get on the computer and check out how his fantasy baseball teams are doing.
Thanks for all the love, support and prayers being sent our way.
Blessed are we,
Sharon
Sunday, June 09, 2002 at 07:42 PM (CDT)
!!!!Change in Phone Number!!!! Please note that we have a different phone number than posted yesterday. Apparently that was a phone number for another room. The phone number is 612-379-3991. We hope we didn't miss anyone's phone call.
Well it has been a full day. We sure enjoyed seeing a professional baseball game. The Twins didn't win, but then again Alex seemed to be pulling for the Marlins as much as the Twins. Didn't really have too much difficulty getting around either. We went shopping afterwards at Best Buy to use a gift certificate that Alex received and then we had dinner. It was quite an enjoyable day! We will be calling it quits early tonight. We start clinic tomorrow at 8:00am. Hopefully we'll learn a lot more about what lies ahead and can share that with all of you then.
It was a good day!
Sharon
Saturday, June 08, 2002 at 10:49 AM (CDT)
Goodmorning Everyone!
We are now at the Ronald McDonald House. We arrived yesterday evening. What a great facility! We are so thankful to be here. We are getting settled in. Alex got to play some basketball in the gym last night and some video games. He came "home" around 10:00 p.m. He likes it here. They are serving lunch at 12:00 today, dinner will be on our own. Later we will probably go out and pick up a few items at the store. Tomorrow we have tickets to a Twins game and we are looking forward to that.
Our phone number here is: 612-379-9434. We have an answering machine in the room too. Our mailing address is:
Ronald McDonald House
c/o Sharon Swanson (or Alex Eddy), Room 131
608 Ontario Street, S.E.
Minneapolis, MN 55414
I know many of you have asked about our schedule and length of stay. We will be beginning "clinic" on Monday, June 10 and Alex will have tests all week to insure that he is physically clear to undergo the transplant. We will also go through some bmt education classes during the week. Assuming everything is "a-ok", Alex will be admitted to the hospital on Monday, June 17. During the next week he will undergo radiation and chemo to kill off his bone marrow. Following that treatment, we expect the transplant to take place on June 25. After that it will simply be a waiting and healing process--for his body to recover from the chemo and for the transplant to engraft and start to produce blood cells. Alex will be in the hospital for a period of 4 to 6 weeks. We will be in Minneapolis a minimum of 100 days post transplant. Just so you know all of this is subject to change. We will keep you posted on the changes.
I want to let all of you who called, sent cards, emails and came to our open house, how honored we feel to have your support and blessings. Our spirits were/are buoyed by each of you and give us such hope and strength as we move into the days ahead. I know Alex was surprised by all who came to the open house, and that he sure enjoyed himself. Did y'all see the smile on his face?
Blessed are we,
Sharon, Alex, and family
Monday, May 27, 2002
Happy Memorial Day!
Well, in many respects today marks the beginning. Today is the day that Alex's donor has their "final" health screenings to insure he/she is a qualified donor. We are keeping our fingers crossed. They say no news is good news, and they expect results to be just fine and that we have a very willing donor. The donor holds a special place in our heart.
Alex and I (Sharon, his mother) plan to leave Shreveport on June 6th and arrive by car in Minneapolis on June 7th. We report to the hospital on June 10th for screening and tests.
We still have much to do to get ready. The "busy-ness" is doing us good.
Blessed are we,
Sharon
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