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Monday, October 6, 2008 9:35 PM CDT
Thanks to those who have checked in with us here and at home in the last few weeks. We once again escaped to Chincoteague the last weekend in September. It was what our family needed at this still hard anniversary. We biked in the wildlife refuge, and remembered Clare biking there with us. We ate ice cream, and laughed, and were sad and happy and the usual run of emotions. It's still so hard that she is gone.
But we keep going, by the grace of God and the support of our family and friends. Thank you for that.
Karen
Thursday, June 19, 2008 9:13 PM CDT
It feels like summer around here now that Phoebe is out of school. She had a really successful year, but is ready for the summer break for sure. Benno starts a new job July 1 which has led to a new car for us. We’re now a two car family for the first time ever, which makes me want to start biking to work so we can maintain our environmental street cred around here!
Phoebe had her first swim meet of the season last week, and had a couple of personal bests so her winter of swim conditioning has already paid off. The team is sponsoring yet another Leukemia & Lymphoma Society Swim-a-thon on July 4th in Clare’s honor, so Phoebe is gearing up for that as well. She leaves for Alford Lake Camp in July for 3 weeks of sleep-away camp, and is really looking forward to it again this year.
I’d like to say that I’ve adjusted completely to working full time, but I’m not there yet. So much to do both at work and at home, and I’m still reaching for the balance. It’s a familiar tune, I know.
We approach what would have been Clare’s 10th birthday next month. The anniversaries are still so very hard, but I’m proud of how we have hung together as a family and lived our lives so far. We laugh and tell Clare stories to each other often, and it helps us all.
Thanks for checking in on us. Keep all those still in the battle (Alex M., Adrienne, Matthew in Indiana, and so many others) in your thoughts and prayers, and go to www.curesearch.org for the latest on legislation to authorize more funds for pediatric cancer research.
Karen
Friday, February 22, 2008 10:29 AM CST
Benno and I both talk about how we used this Caringbridge site as a lifeline while Clare was inpatient, and how we miss the discipline of writing in it everyday. Alas, life doesn’t allow that any more, but we do still come here to remember those past days, even as it is very painful still.
We made it through another round of holidays, and Phoebe continues to do so well in school it is a little scary! She’s a hard worker, and enjoying being 12 and doing all those good pre-teen things. We have a Wii now, and we all play it . . . it’s addicting.
Benno is still working hard, and taking mandolin lessons to relax. It has been an outlet and treat for him. I’ve gone back to work full time as the Parish Administrator at my church, and still spend my free moments knitting. We keep moving all the time, and it helps us a great deal.
I’m watching a few of my on-line friends struggle with relapse and continued treatment for their children. If you pray, keep all children still fighting this terrible disease in your heart and mind, and particularly Adrienne and Matthew. I could list so many more, and it just breaks my heart. I keep that in mind as we continue to fight for more cancer research funding (www.curesearch.org).
As always, we leave you with our thanks for remembering Clare now almost 2 1/2 years since her death, and for supporting us always.
Karen
Thursday, November 15, 2007 8:05 AM CST
I went yesterday to the Senate Health, Education, Labor and Pension (HELP) Committee mark-up of S. 911, the Conquer Childhood Cancer Act which authorizes funding for pediatric cancer research among other worthy goals. The bill was reported out unanimously, which is as far as this legislation has ever gotten, so that was a welcome success. The reality, of course, is that it faces an uphill battle in the House, and already has a hold placed on it in the full Senate (by Senator Tom Coburn of Oklahoma, of course) so that the bill willl need 60 supporters in the Senate to pass.
If nothing else, it is a start, but the reality of this Congress is that money is limited, and pediatric cancer research is pretty far down the list. This bill is only authorizing how money is spent, and the actual appropriations of that money is a whole different piece of legislation on a whole different plane of lobbying.
The interesting argument put forth against the authorizing bill is that in the last Congress it was decided to generously fund NIH, then not pass any legislation divvying up those funds, but to allow NIH to make the allocations. This is a perfect world scenario that a lot of the Senators obviously love: they don’t have to make the hard decisions about which worthy disease gets the funding, but leave it up to the professionals who have the best interests of the world at heart.
Unfortunately, that perfect world scenario isn’t playing out very well in the world of pediatric cancer research. NIH funding went up, but the funding for pediatric cancer research went down. Promising clinical studies were cut, and others never even got off the ground. I would love that perfect world scenario as much as Senator Coburn if I thought it was working, but I guess my real world view is pretty different. I’ve had the autopsy meeting with the doctors who had to say we don’t know what happened in Clare’s case, but maybe someday research will save others like her. It’s pretty difficult for me to live with that, but close to impossible to live with it when research seems to be getting underfunded out of existence.
So, welcome to the imperfect world of politics and pediatric cancer research. Go to CureSearch.org for further details on who is supporting the legislation and what you can do to help.
Karen
Friday, October 12, 2007 3:24 PM CDT
Many thanks to those who wrote or called about the anniversary of Clare's death. We had a terrific weekend in Chincoteague kayaking, biking and eating ice cream while we remembered previous trips with Clare. I think it is a matter of healing to remember even when it is painful. We did laugh a lot, and there was definitely a time when I was afraid we'd never laugh together as a family ever again.
We have a young friend named Matthew in Indiana who needs prayers and healing vibes as he has relapsed for the second time, and is starting that long road to remission and transplant. Matthew's mother Nancy and I are on-line friends from back when Clare was first diagnosed--she and Matthew were on the same protocol, and went off treatment the first time around the same time. Matthew is like a super-hero in his battle against this disease . . . I can't believe his courage and his family's endurance. This family has proven that they are truly Team Never Give Up.
His story is here: http://www.caringbridge.org/in/matthewk
Karen
Monday, September 24, 2007 7:38 AM CDT
I feel like I start so many entries with “it’s a hard time of year,” but it is never more true than in September. This Saturday marks two years since Clare died. It is still very difficult, but we continue on with our busy lives.
We will go again to Chincoteague with friends. There is just something about that part of our world that is healing, and we look forward to being there, on the water.
I continue to be a mostly silent part of the the ALL-Kids on-line community of parents of children with leukemia. Several members of that list have created a You-Tube video with still pictures of many of the kids from the list that is such a powerful tribute to what our kids endure. Clare’s picture isn’t among them as looking at pictures is still very difficult for me, and getting them organized even more so! But so many of the pictures could have been of her as they depict exactly what she also went through.
Here is the You-Tube link: http://www.youtube.com/watch?v=AGS4yE5v9rM
We’re still following the Conquer Childhood Cancer Act. Our Senator Mikulski has signed on to support to the bill as she did in the last Congress, thanks in great part to a friend’s persistence and a well-placed letter to the local weekly paper. Representational democracy and the power of the press defined by an outraged cancer parent!
Check to see if your Representative and Senator have signed on, then write to find out why if they haven’t: www.CureSearch.org. Send them the link to the video above.
Karen
Wednesday, August 1, 2007 6:51 PM CDT
We're in heavy quiet time right now as Phoebe is in her second of three weeks of camp. All her letters are upbeat and joyful at being at camp. She is such a good letter writer! Just like last year's letters, we will treasure these always.
I had a super time in Maine with my buddies. We hiked on the Isle au Haut (part of Acadia National Park), explored Deer Isle and Stonington, and generally talked and laughed (and knitted) a lot. And no, I didn't eat a lobster roll every day--one day I had a clam roll. The food, the scenery, and most particularly, the company was spectacular.
I have to update on the Palisades Porpoises Swim Team Leukemia and Lymphoma Society Swim-a-thon total from the July 4 event. Those marvelous kids raised over $8000! I'm so proud of the whole team, and all the parents who participated as well. We are so lucky to live among such generous and caring people.
What else to say? Summer has its ups and downs, but overall we are surviving. We miss Clare tremendously and often. I've said that we move from distraction to distraction to make it through the days, and that is still true to a very large extent.
Thanks to all of you who help us make it . . . we really appreciate it.
Karen
Wednesday, July 18, 2007 3:44 PM CDT
Phoebe's swim team, the Palisades Porpoises, raised several thousand dollars for the Leukemia and Lymphoma Society at the July 4th Swim-a-Thon. Phoebe swam 130 laps without a break! She is an endurance swimmer for sure, and only slowed down when she couldn't feel her arms anymore! We finally got her out of the pool when we told her the pancake breakfast was winding down, and she might miss out. We are so proud of her, and the $540 dollars she raised from family and friends.
Phoebe is off to camp in Maine on Sunday. I'll be spending a few days with friends in Maine after dropping her off at the camp bus at the Portland airport. I'm so looking forward to seeing Maine again. My goal is to eat a lobster roll a day, so it's a good thing it will be a SHORT trip. Benno will hold the fort here at home, and we'll have our family vacation when we pick Phoebe up at camp in mid-August. We'll be spending a few days in Quebec, a new part of the world for us.
Many thanks to those of you still reading, and I hope you'll check with with the CureSearch.org site to see if your representatives in the House and Senate have signed on with the Conquer Childhood Cancer legislation. If they haven't, email them to ask why! We have a long way to go to fight this beast.
We remember Clare, and so many others we know from Children's and from our online friends: Cam, Baby Donovan, Dylan, Trevor, Matthew H., Jake, Jonny, Katie, Franklin, Quito, Kristin . . . the list is endless and now up by one more: Michael. Keep his family in your thoughts and prayers.
Clare's bone marrow transplant was two years ago today . . . we were filled with hope and trepidation. She would have been 9 years old next week on July 23.
Karen
Tuesday, June 19, 2007 1:31 PM CDT
We haven't updated in a long time, but thank you very much to those of you still checking in on us. We're touched by the messages in the guestbook. Thanks for telling me when you've donated platelets or given blood--what a tribute to Clare! It means so much to us.
We continue to live our lives as might be expected, but it's very, very different without Clare. As always, we camped at Assateague Island for Mother's Day with the neighborhood crowd. It has been two years now since Clare was with us, and being there is very bittersweet, but we can't not go. And it was a very good weekend without gale force winds this year, a real added bonus when you're sleeping in a tent.
This Tuesday is Reach the Day on Capitol Hill, and I'll be going to represent the continuing need for further research on pediatric cancer. I'll be visiting local House and Senate offices, and no, I can't imagine that any staffer is looking forward to talking to me. But, discomfort with grief aside, the message needs to go out that even with the huge strides that have been made in pediatric cancer research, there is still a long way to go. If you haven't emailed your local Representative and Senators, please go to the Curesearch website (www.curesearch.org) for instructions on how to do that.
For those on-line friends from the ALL-Kids list who will be in town on June 25-26, let's try hard to meet up. Email me (ardenroad@mac.com) and I'll send my cell phone number. I will attend the evening reception on June 25, and then be around all day June 26.
Also on our horizon is the Leukemia & Lymphoma Society Swim-a-Thon in Clare's honor on July 4th sponsored by Phoebe's Palisades Porpoises Swim Team. Phoebe swam 100 laps last year, and fully intends to top that this year, so if she hits you up to sponsor her, beware! Two Palisades teammates, Michael Ledecky and Lauren Levy are running the Swim-a-Thon this year. These are dedicated swimmers who are taking the time out of their busy summers to make this fundraiser happen. We really appreciate them, and our "pool family" for remembering Clare in this special way.
Karen
Monday, March 19, 2007 8:35 PM CDT
Democracy in Action, or Mrs. Schmidt goes to Washington
Phoebe and I stood on Capitol Hill last Thursday, and watched a press conference on the re-introduction of the "Conquer Childhood Cancer Act." Our Representative Chris Van Hollen is the main co-sponsor of the legislation with Representative Deborah Pryce from Ohio. Congressmen Joe Slestak also spoke. Both Mrs. Pryce and Mr. Slestak lost a daughter to cancer.
The legislation would authorize an increase in funding for research for pediatric cancer. I haven't seen the text of the bill, but I understand that it is the same language as the bill from the last Congress.
We were invited to attend by Curesearch (www.curesearch.org), along with a few other families still fighting pediatric cancer. We met Rep. Van Hollen, and had our picture taken-it was very windy so I'm sure we look a little wild!
I'm told that this bill has a chance this year because various political planets aligning, but there is just a limit to how much money is available, and to which worthy cause it is allocated.
I have to admit that my long ago career following tax legislation on the Hill has made me a tad cynical, but that research money has to go somewhere. I guess we play the game and see what happens.
Attending this press conference does speak to the power of the local constituent. Several of us there were from the immediate Bethesda area, and we all chatted with the Mr. Van Hollen. The whole scene was a lesson in representative democracy. When he spoke before the cameras about children who have lost the battle, he was reading from a speech written by a staffer who had read a piece written by me about Clare. When the mother of a brain tumor survivor talked to him about static funding levels affecting a researcher she knows whose work could be stopped at great cost to other children with brain tumors, he listened. These conversations took place solely because we live in his district, and he has a vested interest in listening to us.
So, go to the CureSearch website, find out if your Congressman has co-sponsored the bill, then email them a thank you if yes, or a please do if no. For all the powerful lobbying in the world, that simple act may be the most meaningful thing you can do.
This was my first time out at a Curesearch event since Clare died. I'm so glad Phoebe went with me, because it was pretty damn awful to have to say over and over again that I was there because Clare had died. It's hard for me to say and it's hard for others to hear. If Phoebe hadn't been there, I'm pretty sure I would have gone home to cry rather than to grip and grin. I really felt like the bad news personified, a walking grief billboard.
But, we do what we have to do, and I feel like this is what has to be done. I'm lucky enough to live in this city where these decisions are made, so let me be a voice for all those who can't possibly travel here to be heard.
Thanks for checking in. We're still here, putting one foot in front of the other.
Karen
Monday, March 19, 2007 8:06 AM CDT
Democracy in Action, or Mrs. Schmidt goes to Washington
Phoebe and I stood on Capitol Hill last Thursday, and watched a press conference on the re-introduction of the “Conquer Childhood Cancer Act.” Our Representative Chris Van Hollen is the main co-sponsor of the legislation with Representative Deborah Pryce from Ohio. Congressmen Joe Slestak also spoke. Both Mrs. Pryce and Mr. Slestak lost a daughter to cancer.
The legislation would authorize an increase in funding for research for pediatric cancer. I haven’t seen the text of the bill, but I understand that it is the same language as the bill from the last Congress.
We were invited to attend by Curesearch (www.curesearch.org), along with a few other families still fighting pediatric cancer. We met Rep. Van Hollen, and had our picture taken—it was very windy so I’m sure we look a little wild!
I’m told that this bill has a chance this year because various political planets aligning, but there is just a limit to how much money is available, and to which worthy cause it is allocated.
I have to admit that my long ago career following tax legislation on the Hill has made me a tad cynical, but that research money has to go somewhere. I guess we play the game and see what happens.
Attending this press conference does speak to the power of the local constituent. Several of us there were from the immediate Bethesda area, and we all chatted with the Mr. Van Hollen. The whole scene was a lesson in representative democracy. When he spoke before the cameras about children who have lost the battle, he was reading from a speech written by a staffer who had read a piece written by me about Clare. When the mother of a brain tumor survivor talked to him about static funding levels affecting a researcher she knows whose work could be stopped at great cost to other children with brain tumors, he listened. These conversations took place solely because we live in his district, and he has a vested interest in listening to us.
So, go to the CureSearch website, find out if your Congressman has co-sponsored the bill, then email them a thank you if yes, or a please do if no. For all the powerful lobbying in the world, that simple act may be the most meaningful thing you can do.
So, this was my first time out at a Curesearch event since Clare died. I’m so glad Phoebe went with me, because it was pretty damn awful to have to say over and over again that I was there because Clare had died. It’s hard for me to say and it’s hard for others to hear. If Phoebe hadn’t been there, I’m pretty sure I would have gone home to cry rather than to grip and grin. I really felt like the bad news personified, a walking grief billboard.
But, we do what we have to do, and I feel like this is what has to be done. I’m lucky enough to live in this city where these decisions are made, so let me be a voice for all those who can’t possibly travel here to be heard.
Thanks for checking in. We’re still here, putting one foot in front of the other.
Karen
Saturday, January 27, 2007 6:03 PM CST
Another hard loss as Baby Donovan died last Saturday after a long, hard battle. The online community is particularly connected through our children's battles, and Melissa wrote so feelingly of his long ordeal that many people felt a bond with him. Baby D will be missed and remembered. I'm glad I was able to make it to the funeral today, even as a stranger known only through posts and emails.
Their website: www.caringbridge.org/in/babydonovan
The Cabin John Citizens Association Blood Drive is on Sunday, February 4. Call or email me if you need a time slot . . . the need for blood products is tremendous.
Karen
Monday, January 1, 2007 10:44 PM CST
“...and pains and groans and griefs and fears...”
While we were at my parent’s house, helping them pack, I had been writing about the holidays. That post however will have to wait for another day.
This past Friday, just after we returned home, Karen and I donated platelets at Children’s Hospital. There’s not a lot to do while you’re donating platelets, you can watch television, or read, or listen to the conversations going on around you. But on Friday there wasn’t a lot of conversation. Almost the entire time we were sitting in the funny looking chairs, with our feet propped up, the staff of the Blood Donor Center was on the phone, using their schedule book to call previous donors.
Children’s had to go as far as Baltimore to get platelets for Clare. I still remember thinking (Will I ever forget thinking?) “They’ve had to look across the state for Clare’s platelets. That doesn’t seem right.” With all the phone calls being made Friday morning it was easy to realize that Children’s needed blood. I asked one of the staff members how far they had to go for platelets.
“In some cases, we’ve had to look nationwide.”
The American Red Cross likens donating blood to giving a life, but in case that message has been sent too many times, in case that message has lost some of its meaning, I’ll make another comparison. While Clare was on ECMO - for the weeks that Clare was on ECMO - there was as much blood in the ECMO pump as there was in Clare. I know I am repeating something I wrote a lifetime ago but that blood made the pump work, and the pump kept us going. The blood in the pump was our currency and we used it to pay for time. For time to think and plan. For time to talk and research. That blood sustained her while the staff at Children’s worked hard, so hard, to make her well. That blood gave them the chance to try everything.
And I can tell you that there is a great comfort in being able to write, “They tried everything.” Don’t assume that every patient has this kind of time. In our conversations since Clare died, in the stories we’ve heard, it’s become clear that there are many, too many, patients who never get that time. The memorial that Karen wrote about? Well it had a list of childrens' names that is too long for me to go back and count. Too long for me to bear. I can only hope they had the extra time we had.
When she was sick Clare didn’t like getting attention, didn’t like people talking about how she was sick. Didn’t like visitors. But I know she she wouldn’t mind you telling her story, a story where a sick girl had extra time. Because she would want to help. Because she would never want other kids to be sick with no time.
So my point. If you can give blood, or donate platelets? Now is the time. Now. Karen will be sending out the Cabin John Blood Drive email soon. Block out the first Sunday in February. Now. If you are reading this and you don’t live in our area, give to your local Red Cross, or call your local hospital and make an appointment. Now.
If you can’t donate - and there are lots of good reasons why you might not be able to - then tell Clare’s story. And then cover for your coworker when they leave early to donate. Or pick up your neighbor’s kids to they can get over to the hospital. If it were simple and easy to collect blood, there wouldn’t be a shortage. It takes a lot of people working together to get that one, successful, blood donation to happen. Helping someone else donate is just as important as donating yourself.
Donating blood can be daunting, and scary, but it's not insurmountable. After Clare died, I couldn’t imagine going back to the hospital, let alone sitting there for more than two hours. But then Bruce Lunt needed platelets. And that was that. Every month since then I’ve been able to donate platelets. Because, as insurmountable as it is, so many people have helped me get through the door. At my old job, everyone in the company did something to help me donate. Now it’s part of my routine. I give at the end of every month, and thanks to Nancy and Kurt and Meredith, Karen and I could donate last week.
This year, make it part of your routine. We will thank you for everyone who will never know who it was that gave them time. Thank you. Thank you to everyone who donated for Clare and with their blood bought us time. The time to think. And pray. What would we have done without that time? Without that time, we would have gone mad.
And most importantly, thank you to that donor in Baltimore. Who never knew Clare. And to all the people who helped her, or him, donate their blood. We may never know you, and we will never forget you.
The new year.
Benno
Thursday, November 30, 2006 9:12 PM CST
November is a tricky month, and we take solace where we find it. Last week some glorious weather led us outside, onto scooters, then to the path to the creek. We hiked down the trail just past the bamboo forest to the rocky part. And we sat, and enjoyed the sun, the warmth, and the flow of the water. And we missed Clare, felt the gap where she should have been with us. But it was still a beautiful day, although not what it could have been or once was to us.
We have to find the solace where it hides, and sometimes it is very hard.
The first Sunday of the month (All Saints Sunday) was the traditional litany of names read at St. Patrick’s of those who have died. We were in church to hear her name read with all the others, and although I like to think that we’ve met every reality during this hard, hard time face on, this particular reality was particularly painful. A full year later, I can revisit that fresh pain in an instant.
In the afternoon, we attended a memorial service for children who died in the past year at Children’s Hospital. The service was at Trinity College in DC which is just blocks from Children’s. I’d never been on campus before, and it had a solemn, just before the rain falls, quality that was perfect for the purpose of the day.
People spoke and read poems, a woman played the harp, someone sang, balloons were released. At one point, people in the room were invited to the microphone to speak about their child. It was very, very difficult to listen to these bereaved parents, even though I speak the language, however grudgingly I’ve had to learn it. But difficult doesn’t mean bad, and we made it through, and were better for having heard some hard sad stories.
Then the names of the children who died were read, and candles were lit. The list was long, much longer than I imagined it would be. I left Children’s feeling like almost everyone else’s child survived but only mine died. This service proved beyond a shadow of doubt that I was wrong about that.
? I studied that list the whole service. I was so glad to see that some names weren't on that list, particularly a little girl whose mother I sat with in that awful yellow PICU waiting room for weeks. Up and down our little girls went in the PICU, and we sat and worried about every change, every shift.
There were names we recognized, and mourn today. Baby Marcus, whose shell-shocked parents spent hours in the hallway, numb but filled with pain at the same time. We’d learned of his death months after the fact from another PICU family whose son survived.
The boy who had the room next door to Clare in the BMT unit, then followed her down to the PICU in August was on the list. I had hoped against hope that he had survived. His father didn’t speak a lot, mostly because of language differences and from the sheer exhaustion that comes from holding down a job and trying to be at the hospital. We passed in the hallways between the PICU and the Hem Onc floor, resorting to thumbs up or down in a horrible kind of shorthand. I used to ask after him when the Hem Onc docs and NPs would come to Clare, but they were careful to not tell me anything that I couldn’t glean from a mostly silent stricken father’s thumbs down.
The boy whose father Benno had met just days before Clare died was also on the list, we think. So many intense relationships with no names exchanged, drops of time in a long, long period of loss, but deeply felt all the same.
My mother, brother, sister-in-law and niece came to us at Thanksgiving. We had the traditional meal, and it was a comfort to be surrounded by family. We continue to be comforted by friends and family. We are learning to live this new life, and appreciate those people and things that make it possible.
We also continue to pray for those children who continue to fight the fight, particularly Alex and Baby Donovan. Thanks for checking in on us after all this time.
Karen
Friday, September 29, 2006 10:23 AM CDT
Hello, how are you?
After a year, you're still there. Not gone. Keeping and eye on us, checking in with us. We're glad. But how are you? Let us know.
Right now, Phoebe and I are listening to music. Playing your-pick-my-pick - a game Clare and I would play on 4-Yellow in the afternoons after a good PCA adjustment - while we pack for a weekend at Chincoteague with our friends. With Clare's friends. We'll remember her.
This year there have been times when my greatest fear was that I would forget Clare, that my memories of her would start to slip away. Having lost Clare, I felt as if everything about her would disappear.
There are times when I truly think I'm losing my mind.
Then someone would call, or stop by. And we would talk about Clare. In a note, in a post, or an email would come a clear, bright memory of Clare. Even if it was something that I did remember, the the story was new, it was a different perspective. I saw her again, through you.
Each story is different, and who you're telling it with makes it different again. Like the terrible joke I made at Back To School Night that surprised my friends at the elementary school, but made my friends in the PICU laugh and laugh. Clare is everything we all remember about her and who we remember her with.
I'm sure the fears will come again. The path we on isn't a a straight one, and things we thought we'd gone past have come back. Like walking in a circle. "Here I am again!" again. Today is a hard day and it will come back.
So thank you. For remembering Clare, for helping us to see and hear her. For helping us hold onto her. Karey spoke for all of you when she wrote, "..know we will never forget," or James when he said, "...I think of Clare and realize, sadness just can’t win out when it comes to Clare."
But how are you? We know. We see you on the street, or talk to you on the phone. We get your notes, and your emails. But you don't know about each other. You don't know what what poems you're writing, jokes you're telling, or stories you're sharing.
If you have a minute, say hello to each other, to our community, to your community. Tell a story about our Clare.
A year has gone by, and as much as we wish, there are still children having bone marrow transplants, and children in ICUs. As much as we pray, there are still children who have left us. Today let's also think of them, and how with this community of ours we can reach out and help them too.
Benno
Monday, September 4, 2006 6:24 PM CDT
Phoebe started middle school last week, and has pretty much enjoyed getting to know a new school, and a load of new teachers. She has always embraced trying new things, and that is serving her well right now.
Phoebe spent three weeks this past summer in Maine at Alford Lake Camp (near Hope, Maine) with her cousin Isabel. She had a terrific camp experience, and is already looking forward to going back next year. I will treasure the letters Phoebe wrote to us forever as each one was more upbeat than the next—a true record of what a good time she had at camp this summer.
We missed Phoebe tremendously, but watched a lot of movies she would have hated, and ate a lot of food she would have disliked. So I guess it was a good thing for all of us.
We are trying very hard to continue on with life as it moves forward. Back to school time was beyond difficult as we live with the reality that Clare is not here. The end of the month will mark one year since she died. It is very hard.
Many of you reading are on-line friends that I have met through the ALL-Kids email list for parents of children with leukemia, or through the Day by Day list for parents whose children have died of cancer. I would like to offer up a small memorial to a brave warrior against this beast of a disease who died yesterday after years and years of fighting: Cam Dalene. He will be greatly missed both by those who knew him and those who only knew of him through his mother’s words. I never met Cam or his family, but like a lot of people, I grieve with them.
Karen
Cam’s Caringbridge site: www2.caringbridge.org/ct/camdalene
Saturday, July 22, 2006 1:06 PM CDT
It was a year ago on July 18 that Clare went into the hospital for her bone marrow transplant. It is a difficult time of year for us, although we continue to be as busy as possible with preparations for Phoebe to go away to camp among other things.
On July 4th, Phoebe's Palisades swim team again sponsored a swim-a-thon to benefit the Leukemia and Lymphoma Society in Clare's honor. It was very well-attended with 53 kids swimming a total of 3657 lengths of the pool which is over 60 miles. They haven't totaled the money collected yet, but we are so grateful to our friends on the team and at the pool for making this happen again this year.
Phoebe swam an astonishing 100 lengths which was well over her original goal of 80 lengths. She was rightly very proud (and very tired) and we appreciate everyone who sponsored her.
Tomorrow is Clare's birthday, the first one since she died last September. She would have been 8 years old. We struggle every day with our loss in ways that are seen and unseen by our community of friends and relatives. We so appreciate everyone's support and patience as we make our way. We feel like every day we're just making it up as we go along. Sometimes that works, and sometimes we kind of lose it, but we keep going. I'm proud of us that we can say that after just 9 months since Clare's death.
Karen
Wednesday, May 3, 2006 4:41 PM CDT
We've gone a long time without updating, mostly because it takes a lot of our energy just to make it through the highly recommended "one day at a time." We struggle on, and are approaching many difficult anniversaries with Clare's relapse date on May 13 being the first to come.
I think it is safe to say that we are making it through okay, but we've had some hard times, let me tell you. Many thanks to those of you still checking in as we really appreciate it.
Phoebe is busy with many things with school, her last year at Bannockburn Elementary. She is taking a yoga class, and is swimming once a week under her coach's supervision in preparation for the highly anticipated summer swim team at Palisades Pool. We marvel at her strength and sensitivity as she's had to face such difficult things at this young age.
Some very nice memorials are in the works at school and at the pool--we'll post pictures when they are available. Our communities continue to support us, and we are very thankful for that.
We all miss Clare so very much.
Karen
Monday, February 13, 2006 7:16 PM CST
Every week, more or less, we all go to family counseling, where we talk about how things are going. And we talk about Clare. Sometimes it's hard to talk about her because it hurts. We miss her. It's lonely without her. But it helps to talk.
In counseling we talk about what we've lost, and what we still have. There's usually an activity to do, a memory chain to make, or a book to read aloud. The activities help too. It's nice to have something to do with your hands, something that goes along with the talking.
Two sessions ago, we all were given index cards that started with "Hope is..." and were asked to compete the sentence. Then our counselor shuffled the cards and told us, "You just wrote a poem about Hope." and then read it to us.
If you're struggling with Clare's death like we are, well, making time to talk about Clare and having something to do while you're talking really helps. The poem thing really helps. Here's ours. See if you can figure out who wrote what.
Benno
Hope
Hope is patience.
Hope is hard to find, but within our family.
Hope is when life has only one last light. You hope that the light will spread. I like pie.
Tuesday, January 3, 2006 8:56 PM CST
I haven't written in the journal for a long time, since Clare died, I think. Benno and I both want it to stay as a monument to what Clare did, and what we did as a family before she died. Unfortunately, as much as I can't really bear to think about it, other families go through what we went through. If this journal could help someone else, then that is only good.
I read many online Caringbridge sites after Clare relapsed, even the ones where the child died. They helped me, and I can only hope that even though ours ends tragically for our family, that some sort of lesson could be learned. So here is an update that attempts to round out the medical aspect of this journal.
Benno and I went to the autopsy meeting at the hospital in November. We met with one of the three transplant doctors who treated Clare (the one that was with us the most at the end) and with the oncologist who treated Clare from the beginning and held us together at relapse. On our way to the elevator, we met up with the oncologist who treated Clare through a lot of maintenance and at almost every post treatment check up. I felt a tremendous sense of the end of an era. I guess if you can't get closure at an autopsy meeting, you're just not going to get it, period. Closure is a bit overrated, I think, as it hasn't made this particular hell any easier, yet.
We sat at a conference table in the hem onc office space on the other side of the hospital from the hem/onc floor and talked about death in very clinical terms. The report is 8 pages long, and is written in very technical language, hence the need for the meeting. You would definitely not want to read this without some explanation because the terminology is very dense. Benno and I feel like we've been around the block medically, but this was way above our vocabulary.
The bottom line: autopsy proved what the lung biopsy performed the day before Clare died showed--that her lungs were completely fibroitic (scarred) and beyond recovery. The final results on her brain were not available yet, but examination didn't show that she had any visible brain damage. Her kidneys were not functioning, but didn't have any physiological damage--they may have worked again if she could have recovered from the lung damage. There were no signs of Graft Vs. Host Disease anywhere in Clare's body.
The effects of being on ECMO for as long as she was were severe. We assume that this is from circulation issues that occur because of long-term ECMO use, but the report didn't comment on that issue. I'm not able to go into the details here, but if anyone reading this is facing long-term ECMO, we would be happy to email with you.
We didn't really learn anything new from the autopsy, and the major question of why Clare's lungs became so damaged remains unanswered. The standing theory is that the pre-transplant conditioning and radiation set off a reaction in Clare's body that severely damaged her lungs. The doctors don't know why this would happen in an otherwise healthy 7 year old who had easily achieved a second remission after relapsing in the CNS and marrow 16 months post treatment for standard risk ALL with no previous CNS involvement.
So that wasn't very satisfying, but what can you say? Clare's information is out there now as part of the Children's Oncology Group database, and maybe some researcher will figure out why this happens to some children.
Many thanks to those of you who are still stopping by to check on us. We are feeling the pain of grief, but holding together as a family in every way we know how. Our community of family and friends still support us, and we depend on them every day.
Karen
Tuesday, November 22, 2005 6:53 AM CST
"...it just gets different."
Before we leave for the holiday, we wanted to post the sermon our friend Robert preached the Sunday after Clare died. Robert is a seminarian at our church and is beginning his second year with us. We've had the chance to get to know each other during the past year, and you all have seen that we call him brother. This is because Robert walked the road we are now walking when his family suffered their loss from childhood leukemia. And the great gift he has given us, as we see him walking out there ahead of us, is a gentle, constant reminder. Don't loose faith.
Holidays are hard, and they're going to be hard. But there are moments - when you're outside, when your in the sun - when your mind works the way you want it to. This holiday, in these moments of respite, give thanks. Give thanks for all the good things you have see this year. Give thanks for Bruce and Leah and Christopher. Give thanks for Julia and Brandon. Give thanks for this community. Give thanks for hope. Give thanks for scientists and caregivers. Give thanks for these brief moments of clarity.
Benno
On Being God’s Vineyard
Proper 22 – Matthew 21:33-43
Preacher: Robert Marshall
Wednesday night I was sharing with a friend the sermon I had prepared for this morning’s challenging Gospel lesson from Matthew that talks about us being God’s vineyard. That sermon however will have to wait for another day. Thursday evening, and into Friday morning the life of this parish was changed forever with the loss of Clare Schmidt. My apologies to any visitors we may have with us this morning who were not lucky enough to have met Clare, but my hope is that by the time I am finished you too will feel a connection to an incredibly special little girl.
Ask any person who has been here for a while and they can probably tell you about the first time they met Clare. I remember. For me it was kick-off Sunday of last year. James and I, along with his wife Laura, were enjoying the big cook-out, but feeling as if we didn’t know a soul, when up walks this confident smiling little six year old who says, “Hi, my name’s Clare…welcome to my church”.
Clare’s feeling of ownership and belonging here at St. Patrick’s should make all of us proud. I believe it is exactly why God’s people are often referred to as a vineyard. Just like the grapes on the vine, we are all somehow connected and dependent on one another if we are going to be true to what he calls us to be. It is a term used in all three of this morning’s readings, and while they contain other messages we can talk about at another time, I think it is important this morning to simply focus on the fact that we are God’s vineyard…a vineyard that this morning is in a lot of pain. We are a vineyard that is in need of attention from the vine grower, God. But where is God in all of this? What kind of God would allow this to happen? Why do Phoebe and Karen and Benno, and the rest of their family have to go through this? The truth is, I cannot even begin to have the answers to any of those questions, but what I can do is remind us all of some of the things we say we believe. Our God is a loving God…the very source, and the very definition of infinite, unchanging, and unconditional love. It is not in God’s nature then to “cause” the death of anyone. We also believe that such an inconceivable form of perfect love is exactly why God is holding us in the midst of, and the aftermath of horrible things that happen in this world.
I believe then that God understands and maybe even expects those kinds of desperate, angry, tearful questions from all of us who are truly fruit on God’s vine. You see, if we are the very image of God, then it is in our deepest being that we want to love in that same way. We of course are not God, and will never love in quite that way…but when we are attempting to truly love one another in the way God calls us to love…the way we all loved Clare…it makes us vulnerable. It makes us vulnerable to pain, confusion, anger, sadness, and deep grief. But it also opens the door for great joy, amazing laughter, deep caring, and a connectedness to one another that can feel just like being part of a vine…never really feeling complete or fully alive unless that connection remains.
Friday James and I came over here to St. Patrick’s, and after praying for a while in the Chapel James told me something that resonates with that sense of being vulnerable through God’s love. He said, “I feel sad, but then I think of Clare and realize, sadness just can’t win out when it comes to Clare”. How true it is. It isn’t just the day we met Clare that we can remember. It was probably every time we saw that smiling, bubbly, outgoing seven year old who carried on conversations better than some of us do as adults, that happiness won out.
But if we are to be honest with ourselves we must admit that extreme sadness is a part of this. We as humans, who have done what God asked by being vulnerable, want to hold on to those people who are dear to us…we want to hold on to Clare, because we selfishly want to continue with the happiness that comes from such love. What we must understand is that the vine, the “true vine”, as Jesus says he is in the fifteenth chapter of John’s Gospel…stretches all the way into heaven thanks to his resurrection and victory over death. We as the fruit of God within his vineyard are connected to that vine. What does that really mean?
Well, let me suggest a couple of things, both of which I believe are contained in what a dear friend told me on Friday morning. Right smack dab in the middle of me feeling incredibly sad and wanting to do something for Benno and Karen and Phoebe, but not having any idea what that would be, this dear friend reminded me of the blessing it was that Benno and Karen could hold their child and talk to each other and God…and eventually get to the point of knowing it was the right thing to let her go to be with God. He said, “If we believe what we say we believe about being an Easter people, and living eternal happiness with God after this earthly life…it was time for Clare to go to her true home”.
That dear friend was Benno. The morning after his daughter’s death, Benno was able to minister to me. His faith, and understanding of what it truly means to be one grape connected to a vine of many, allowed him to speak God’s truths to me at a time when I really needed to remember those truths. So the two things I believe Benno summed up so well for all of us about what it means to be God’s vineyard are that not even death can disconnect us from the vine that is God’s love resurrected to eternal life through Jesus. Just as Paul tells us in the eighth chapter of Romans, not even death can separate us from the love of Christ; and secondly I believe what Benno said in relation to the vineyard is that it is in times like this that we must remember that connection with all of us who are left here to mourn. Now, more than ever, we must take care of each other. That, is the love of God and neighbor we are all called to live.
Certainly that means doing whatever we can for Benno and Karen and Phoebe in the days, weeks, months, and years to come…but it also means recognizing when our Clergy are at a low point, and need the loving shoulder of a fellow grape upon which to cry. It means looking at the people on either side of you this morning and realizing you are at least responsible for letting them know they can talk to you about Clare, or any other loved one who has passed on to eternal life, whenever they need to. It means we all have to continue caring for all of us…forever.
Because the truth is, grief like this doesn’t really ever end, it just gets different. Remember, God understands all of the emotions we are feeling and eventually we will be able to give some of those over to God to handle for us, but for now…we must be conscious, caring, and giving grapes all connected to the true vine, which is rooted in God’s love.
So remember, we remain connected to Clare through the power of that vine…still able to learn from God and each other through our experience with her. I am quite sure that when Clare was born, Benno and Karen thought they were going to teach her all about life and God; and now they realize she taught them, and all of us, so much more.
There are a few more lessons I believe Clare has given us all through God if you will indulge me for just a couple minutes longer.
God really doesn’t give us more than we can handle…the world does, but it is never more than God can handle for us.
Sometimes when we think God is farthest away, He’s really the closest.
No matter how difficult the journey, God really is with us every step of the way.
That no matter how terrible a situation, God can bring good from it. God IS the good in everything.
That sometimes the smallest in body are the largest in spirit.
And that as long as we remain connected to each other and to God through the power of the true vine, we will never be separated from the true love that can sustain us through anything and everything.
Monday, November 7, 2005 10:19 PM CST
Yesterday, in a small ceremony - Clare's godparents Tom and Kathleen joined us - led by our rector Betty McWhorter, Clare's ashes were interred in the columbarium at St. Patrick's. As the five of us stood there at the church, we all thought of Clare's Memorial and the sermon Betty preached. And Tom, Kathleen, Karen and I also thought of the great spiritual community that supported us and our daughter from the beginning of her life here on earth, to its end. For those of you who were with us that day, but unable to attend the memorial, we've asked Betty if we could reprint her sermon, "The Clarity of Clare".
For the four of us, we would like to take this opportunity to thank everyone at St. Patrick's for taking care of our girl, especially those who have the challenge of guiding us through these good and bad times. Thank you Betty. Thank you Marjorie. Thank you Paula. Thank you James and our brother Robert. Thank you David and Rachel. And thanks to Peter, who many years ago, took that first phone call from us the day after Clare was first diagnosed. Thank you everyone at St. Patrick's.
Benno, Karen, Tom and Kathleen
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The Clarity of Clare
Clare Maureen Schmidt.
The "Schmidt" is from her Daddy Benno's family...strong German stock. Grandparents Nancy and Kurt are here along with uncles, aunts, and cousins.
The "Maureen" is from her mother Karen's family, a name she shares with her grandmother Phyllis, also here today...along with uncles, aunts and cousins and Grandpa Bert is here, present in spirit.
Names that are gifts from both sides of her wonderful family. Ahhhh...but "Clare"..."Clare"...that name is all hers.
Most of us grow into our names...and that makes great sense as the name we are called from birth (or before) is the familiar...and so we just grow into it. Yet for some, for a very special few, growing into a name is much more than familiarity, much more than people commenting "She looks like a...." or "His name so fits him." For some, there is a magical, mystical connection between name and being.
It is so with Clare...C..l..a..r..e. A name her parents agreed upon after disagreeing on at least one other name. A name her mother firmly stated would be spelled C..l..a..r..e...after the formidable Clare Booth Luce whose biography pregnant Karen was reading at the time. A wise person might have known the world was in for something...or someone.
Clare...C..l..a..r..e. Take off the "e" and add "ity" and we have Clarity...The Clarity of Clare.
Though an earthly life far too short in its seven years, the Clarity of Clare is far more vast than that of many a life lived for decades. Let’s take a look.
The Clarity of Clare...those among us who had the honor and pleasure of knowing Clare can recount her strength in stating what she wanted...or didn’t want...always, politely of course. Ask the medical person who appeared in Clare’s transplant room, announcing yet another procedure to come with needle. Clare’s response? A very polite and clear "Oh, no thank you."
The Clarity of Clare is also the wisdom of Clare...the wisdom she showed day after day, especially this summer and into early fall. In her very being she reminded us of the importance of the little things in life...breathing holy, small, cleansing breaths; nonverbal ways of communicating...a hand squeeze in excitement when she learned she was in Mrs. Gugerty’s class...the grace filled nodding of her head in answering "yes" or "no" to questions; the importance of a manicure, even, especially when you don’t feel well;
What of that fearful scowl about which Uncle Mark wrote:
Ahhh... Who among us would not shirk or howl,
When hit square with a piercing "Clare scowl"?
I once felt it directed towards me,
And fled to hide behind a tree,
But settled for a head-concealing towel.
The doctors, nurses and medical folks quickly learned that Clare was the GREAT communicator...and so one of the daily mantras became "What is Clare telling us? What is Clare teaching us?" Then they would listen...and look...and listen...and look.
The Clarity of Clare says that the strongest and deepest communication goes far beyond words...and involves intense and intentional listening and looking.
The Clarity of Clare reminds us all that laughter is good medicine...even when it comes in the form of corny, really corny jokes. Ok, here’s one:
Why is it not a good thing to tell secrets to pigs??
‘Cause they might squeal on you!
Laughter lowers blood pressure and sends good vibes throughout the body’s system...Clare was clear on that.
Clare took us out...way out beyond the everyday things...and reminded us of the importance of the everyday things...like dogs and cats and butterflies. Who would dare say animals don’t understand humans when we read that Angus the dog sat in the refrigerator when Clare got hot...or Lynn the cat empathizing with Clare by getting sick herself? And how many of us worked on our spitting skills after Clare reminded us this is a very important life skill to have?
Ah, the little things in life...matter. That is clear.
Clare’s clarity took us into grownup things, hard things, things we don’t really like to have to deal with. Things like having to live with the questions that don’t have detectable answers.
Rainer Marie Rilke, a poetic predecessor of Uncle Mark, once wrote that even when we do not have the answers, we are to live everything, including the questions. "Live the questions now" wrote Rilke in his Letters to a Young Poet. Clare taught us that sometimes answers so desperately wanted and sought are not to be found by us...answers in medicine that would heal Clare’s lungs; answers in faith to that very human question "Why? Why, God?" Answers to specific prayer requests.
Another Clare story: as she was preparing for her transplant, Clare was asked "Do you want to see this, Clare? Do you want to do this, Clare?" Clare kept shaking her head "no," then finally said "Let’s just get on with it." Sometimes, life’s answers are not to be found...yet life has to be "got on with." Clare was clear about that.
The Clarity of Clare is grounded in patience...patience in waiting...and in that waiting and listening, being taken into a special place: a place where we learn...or relearn in a deeper sense that we are not alone. A place where we connect with people from all over the world...people who sit in front of computers and read the CaringBridge website while tears fall and laughter sounds; while hope rises and fear appears; while questions are asked and prayers fervently offered...and through it all, it is clear we are not alone, not then, not now, not ever.
The Clarity of Clare is that of which St. Paul writes in his beautiful letter to the Christians in Rome that Marjorie read earlier...nothing can separate us from the love of God...nothing. And if nothing can separate us from the love of God, then no matter what, we are never alone. Never. And if we can’t be separated from God, the God who creates us and loves us to life, then we can’t be separated from those we so dearly love...even when their earthly bodies cease to breath. The creative, life-giving power of Love wins out over all...every time, always, in all ways.
And love more than wins out, it multiplies if we dare give it away.
Have your doubts? Remember the gospel story we just read? The gospel story about feeding the five thousand...by the way, that is Phoebe’s favorite gospel story and was a favorite of Clare’s. Remember it is a little boy...could easily be a little girl, who offers all that he has...five loaves and two fishes...to those in need. And it is enough...in fact, there is more than enough. There is even some left over for use in the future!
The Clarity of Clare packs a wallop for our lives if we will allow it. For each one of us, whether we actually knew Clare or not, whether we ever engaged first hand those sparkling brown eyes and that dazzling smile or simply came to know her through the website or through word of mouth or through caring for her at Children’s, has been fed by what she offered in life, nourished by her clarity of what life is all about, no matter its length. Each one of us carries in us a bit of the light of Clare, the power of love. Though Clare is no longer with us in the way we have known her, in the way we so desperately desired to continue, she is, and will be, with us for the rest of our days, every day. That’s the promise of God.
In our liturgy in a moment, we will hear those powerful words...Life is changed, not ended.
So, it is, my friends, so it is. Life is changed forever with Clare’s death. Yet, more importantly, life is changed forever because of Clare’s life.
Go forward this day, more clear about life, more clear about the importance of the little things, more clear about the power of love, more clear about living each day as it comes, more clear about the need to laugh, more clear about the need to share, more clear about living into the questions even when the answers elude us.
More clear...about giving thanks for Clare Maureen Schmidt and her gift to each and every one of us.
Amen.
The Reverend Elizabeth S. McWhorter
St. Patrick's Episcopal Church
Washington DC
Wednesday, October 26, 2005 7:32 PM CDT
Last Sunday, we found ourselves in the western end of Maryland, following a trail along two creeks. One creek leading into the other. The trail led to an overlook between a falls and a historical marker noting that Edison, Ford and Firestone had camped there in the early 1900's. But it doesn't say why they were there or where they were going. Doesn't tell us the story.
At the top of the falls, Phoebe sat crosslegged on the flat rocks, closed her eyes, and listened. Being outside is comfortable.
Standing in the woods, even if you know how big they are, even if you've seen them on a map, they seem to go on forever. Like the river. Like the horizon. You stand in the middle of them and you feel small, but, somehow, connected to how big they are.
You, somehow, feel comfortable.
Since Clare died you've been taking good care of us. Checking in. Are you eating? Are you sleeping? Are you getting outside? Honestly? Right now we wonder all the time how to connect the small and big. We take the small pieces of our days and try to fit them into something bigger.
Phoebe says, "We're starting to put things together again." But some days, some hours, some minutes, even starting seems far away from where we are. Someday we'll be able to put up our own historical marker. We know why we are here. But right now we can't tell you where we're going either. We don't know our story.
So we are listening to other people's stories. In books, music, in letters and conversation. Joan Didion's, "The Year of Magical Thinking". Lou Reed's "Magic and Loss". Ms. Didion's story of losing her husband, and nursing her ill daughter is unflinching and honest. Mr. Reed's songs describe what it's like to live with a cancer patient in uncanny and accurate detail. Funny how magic ends up in the titles of two works, more than ten years apart.
Both are eloquent stories, saying far more, far better, than we could say. Hearing other stories - hearing from you - gives us something to hold on to. In so many of your cards, and calls, and conversations you've told us stories about siblings, or children, or parents, or friends that you have lost. Your stories are eloquent too. Don't stop telling them. Send them in a letter, leave them on the porch, put them in the guestbook.
So what do we do? We go to work. We go to school. We spend the afternoon with our friend at her riding lessons. We ride our bikes, first thing in the morning, to Great Falls. We're on time. We're late. We eat a lot of ham. No one warned us about the hams.
We stay up late watching TV. We sleep. We can't sleep. We turn the corner and start crying. We treat ourselves to coffee. We go to the dentist where you get your nails done after your teeth have been checked. Which is fabulous if you're nine.
We drive to Pittsburgh for a long weekend. We see the house at Kentuck Knob. We talk on the phone. We can't talk on the phone. We go to the pumpkin patch with our friends and bring home apples. We read the cards you sent us. And read them again.
We donate platelets (as always, 202-884-5437) for Bruce Lunt. That's something you can do too, as he heads into his transplant. We get the chance to start our long list of thank yous to CNMC when we run into Clare's primary nurse from the night shift. And we walk one time around the outside of the hospital.
Then we listen to Irving Berlin while we post new photos.
"What'll I do with just a photograph,
to tell my troubles to?
When I'm alone with only dreams of you,
that won't come true, what'll I do?"
Benno
Day +100
Wednesday, October 12, 2005 12:41 AM CDT
So. Here we are. And when asked how we are doing, Phoebe - not surprisingly - is the most succinct. "I'd say we're trying to get things back to normal, and it's not really working. But we'll get used to it."
As the new introduction notes, we are going to leave these pages up. From the beginning, when Clare was first diagnosed with leukemia in November of 2001, to her death almost two weeks ago, we have wanted to find as much good in the bad as we possibly could.
Which brings us to hope. Hope is good. When you find yourself walking the path we are walking, hope is most precious thing you have. Its opposite - despair - is ever present and relentless. Without hope it's impossible not to succumb to despair.
Up until the end, up until the last day, there was always hope in Clare's room. You only have to look in the guestbook as far as at Denise Thomas's description of Clare's last night to see that hope was there. Or re-read Lucy Shapiro's almost daily posts. We had hope given to us every day. That is the story we want these pages to tell.
Clare's story, our story, is also one of community, a big community. If you were at her memorial you won't doubt that. If you weren't there, have someone who was describe it. And as we have said before, it was our community that sustained us, that kept us from despair.
While Clare's story has a sad end, it would be a shame to lose the story of hope and community because of how it ended. Hope and the community that nurtured it are the great gifts you all have given us. The hope we had during Clare's illness, and now the hope we have that we can learn to live this funny life with and without her.
Phoebe has returned to school. Somedays she comes home early. I'll start work again next week. Karen is reconnecting with friends and routines. The cat is back at home. There's some work to be done on the site, some final messages to post, some pictures to add. And we will always be checking the guestbook.
Stay well, our dear, dear friends.
Benno
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Many people have asked about a tribute to Clare. We have asked that contributions be made to CureSearch, in Clare's name. You can find out more about making a donation at their website www.curesearch.org.
CureSearch is an organization that represents the combined efforts of the National Childhood Cancer Foundation and the Children's Oncology Group (COG). Clare was treated initially under the research protocols of COG.
Tuesday, October 4, 2005 9:41 AM CDT
Services for Clare will be held on Saturday, October 8 at 10:00am at St. Patrick's Episcopal Church (4700 Whitehaven Parkway NW / Washington, DC 20007). This will be a family friendly memorial service with a reception to follow at the church. Children will be welcome and made to feel comfortable although we completely understand if they do not wish to attend. There will be no viewing or interment at this service, just joyful remembrance.
Directions to our church are found here: http://www.stpatrickschurchdc.org
The Lance Armstrong Foundation Tour of Hope will be riding through Cabin John along MacArthur Boulevard toward St. Patrick's just as we will all be heading there for the service. Many of you will remember fondly the wonderful time we had last year at this time cheering the cyclists. So wave to the riders, and allow plenty of time to get to St. Patrick's as there will probably be some temporary road closings to allow for the ride.
In the "what next?" category, our phone service at home is not working as the phone company switched our house to the fiber optic network without actually wiring our house for fiber optics. They are coming out today to fix the situation, but calling via our cell phones might be a wise choice for a while.
Karen
Sunday, October 2, 2005 8:19 PM CDT
Services for Clare will be held on Saturday, October 8 at 10:00am at St. Patrick's Episcopal Church (4700 Whitehaven Parkway NW / Washington, DC 20007). This will be a family friendly service with a reception to follow at the church.
Directions to our church are found here: http://www.stpatrickschurchdc.org
Our family and friends are rallying, and we depend upon them, particularly Benno's parents who are with us and helping at every turn. Thank you for your many prayers and messages of love.
Karen, Benno and Phoebe
Friday, September 30, 2005 7:32 AM CDT
Clare left us yesterday.
Her ECMO pump was no longer supporting her. The lung biopsy showed us that her lungs had been irreversibly damaged.
Clare was telling us she was ready to go.
There are so many people to thank, who helped us, and Clare, through this difficult journey. We hope to start soon.
Benno, Karen and Phoebe
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Phyllis and Aunt Nancy, we're having trouble reaching you by phone. Call when you can.
Wednesday, September 28, 2005 12:34 AM CDT
Day +72 Morning
The other half the procedure has been completed. Clare's lung biopsy was finished just before noon with no major complications. We should have results back from Pathology in one or two days that will tell us how damaged Clare's lungs are.
Again. Patience.
To compensate for the critical bleeding problems Clare could develop as a result of her surgery, she's been put on twice daily platelet infusions. If you have been considering donating platelets, now is the time. The blood donor center at Children's can be reached at (202) 884-5437.
Benno
Tuesday, September 27, 2005 11:20 AM CDT
Day +71 Morning
Half the procedure has been completed, as Clare has had her CAT scan, but the operating room was unavailable - as they sometimes are during an emergency - so Clare is back in her room, and will have her lung biopsy tomorrow.
As frustrating as this is for us, it makes the work of Clare's team all the more remarkable.
Taking a patient on ECMO for a road trip is a herculean task. Eight (or was it nine?) people worked in unison moving a 500 pound pump and a hospital bed connected by two feet of tubing, inch by inch, from a room on one floor to a room on another floor. And back again.
Patience.
Benno
Monday, September 26, 2005 11:46 AM CDT
Day +70 Morning
After reviewing the data collected over the weekend, Clare will have another road trip tomorrow, for a CAT scan and a lung biopsy. For today, just rest.
Benno
Sunday, September 25, 2005 6:15 PM CDT
Day +69 Evening
Another day spent waiting for the pneumo-thorices (no idea if that is how to spell that) to heal. The boxes connected to the chest tubes are still bubbling slightly so hopefully by tomorrow's x-ray they will be completely resolved.
Thank you for your prayers and many kindnesses.
Karen
Sunday, September 25, 2005 8:10 AM CDT
Day +69 Morning
Clare had a hard night last night, but good things came of it.
Early yesterday morning, after she was proned two pneumos developed in her lungs, one on each side. This may have been from the positioning, or from the pressure in her vent.
To correct them she was turned onto her back, her vent pressures were reduced. The left one was finally resolved by putting a second chest tube on her left side. On the right side, her first chest tube was in the wrong position to remove the air, so a third tube was added, and again the pnuemo resolved.
Her last three blood gases were good, and there were no problems with her sedation.
We are often complimented on our strength. The truth is, we have none. What we have is your prayers. I can’t truly describe what it’s like to have had you all praying for us these last 24 hours. But I can tell you that it held us up.
I suppose none of us can really explain prayer. But at least I can begin by comparing it to the feeling you have when you’ve had a bad fall, and someone helps you up. Not the physical sensation of being pulled up, but the feeling you have knowing that someone is there, helping you. The feeling that lets you continue on.
There have been many times in the PICU where I have felt almost physically held up. Those are your prayers. Your prayers let us move forward, they give us strength. They let us learn, and understand. They let us talk and laugh. They let us find our way, as best we can. They let us be with hope, and with Clare.
I met another PICU dad this morning. Yesterday was our day for you prayers. They held us up. Today is not. Today your prayers are for the dad I just met. For him, and for his family. Please hold them up.
At St. Pat’s there is a time in the service where we can add prayers – out loud – to the prayers of our congregation. If anyone at St. Pat’s reads this before the service this morning, can you please say this prayer, “For the family in the isolation room in the PICU at Children’s Hospital in Washington, DC”.
Wherever you are, if any of your services are like the one we have at St. Pat’s where you can ask your community of faith to pray for someone, please add this prayer as well.
Benno
Saturday, September 24, 2005 10:37 PM CDT
Day +68 Evening
A long, rough day. Thanks for all your prayers. Looking for a better day tomorrow.
Karen
Friday, September 23, 2005 6:20 PM CDT
Day +67 Evening
Clare is in the prone position as of this afternoon. It took many people a long time to work out how this would happen, but it did happen.
So far, it seems to be helping as her sats have been excellent ever since. We're also very pleased that the skin on her back is in good shape. It's hard to believe that she's been on her back without even the respite of sitting up for 47 days.
I know many of you are taking part in the "pray where you are for Clare" vigil tonight and over the next 24 hours. Thank you so much, and thanks to Heidi Brown Lewis for her faithful support in brainstorming and organizing.
We've been very, very focused on Clare's lungs for a long time, but of course it was a bone marrow transplant that got us here in the first place. So it is unbelievable that this is news for the last paragraph for an update.
The final flow cytometry tests are back, and it is official: Clare is 100% Phoebe donor cells. That is called engraftment, and means that the bone marrow transplant was a success.
Karen
Friday, September 23, 2005 10:01 AM CDT
Day +67 Morning
Last night.
Last night you should have seen the waveform on the respiration monitor. What should be a steady line, punctuated by medium sized, evenly spaced rises was a darting line, with short little irregular rises. It looked like fur. The oscillating vent makes the waveform unreadable and the number unusable.
Last night I was in a hurry for Clare's next milestone, so I tried to cajole the nurses into proning Clare ( When are they going to prone her? Tomorrow? Are you sure? Why not now? Come on! We could get enough people! Let's go!). Fortunately, cooler heads prevailed.
Last night I felt strangely optimistic for a moment, right after I waved hello to the nurse who gave me the pep talk a few weeks ago, right when I needed one. Sometimes being optimistic makes good sense. Sometimes it feels like you must be crazy. Sometimes you need to be reminded of it.
Last night Clare had good, consistent sats all night long. Not great sats, by any stretch of the imagination, but good ones. And her blood gases were also good, not great, without any of the outliners in the hundreds that can be so illusory.
Last night was complicated by what may be bleeding in Clare's GI tract. We should know more about it today.
Last night I realized that come tomorrow, Clare will have spent half of her time in the hospital on ECMO.
Last night we thought of yet another hurricane, and the people whose lives with be decimated by it. Keep them in your powerful, supportive prayers.
Benno
Thursday, September 22, 2005 6:22 PM CDT
Day +66 Evening
Clare had a broncoscopy today to gather further information on the state of her lungs. Interestingly enough, pictures were taken and her airways look pretty good. One doc even described them as "nice and clean." While this is good news, it also leaves us hanging as to why these nice and clean lungs do not oxygenate her blood.
Do I sound a tad bitter? I'm really trying not to expect too much from any one test or procedure, but it is hard not want someone, anyone, to come around the corner saying "eureka! this is it!" Our PICU doctor told me today that we could still have a very long road ahead of us.
The plan at this point is for Clare to stay on ECMO and on the oscillating ventilator she was put on today to see if her lungs can be opened up enough to start doing the job. You may remember our descriptions of the oscillator: basically it is a ventilator that delivers small breaths at a rapid rate much faster than normal respiration. This is gentler on the lungs, and may have a beneficial effect of spreading surfactant (added during today's procedure) throughout the lungs.
Another plan in the works is "proning," where Clare will be turned onto her stomach to allow gravity to do some work on opening up her lungs. Hard to imagine how they will do this while she is on ECMO, a ventilator, and with more tubes than probably any other child in the whole place, save for that little baby on ECMO in the room next door.
But hey, I'm lacking in medical imagination as I couldn't visualize how they would get her out of the room yesterday until I saw it done.
So Clare got platelets again today as she has almost every for weeks. The bag had a sticker that said "directed donation." So judging by the collection date, I'm pretty sure there is a little bit of Dave and/or Darlene Melkonian clotting up my daughter's blood even as I type this. Thank you so much! And thank you Cindy Zammit for donating today, and for the bag of mini-chocolate bars that made a whole lot of nurses and techs very happy today. I can still share, I'm pleased to say.
We can't do it without all of you. I'm so moved by the guestbook every time I read it. Thank you, everyone.
Karen
Wednesday, September 21, 2005 6:12 PM CDT
Day +65
Today's road trip to the catheterization lab went well. The amount of organization that it took to pack up 6 med pumps, at least 3 syringe pumps, the ventilator (went down early so Clare was hand bagged on the way down) not to mention the ECMO machine was unreal. Every step was planned and thought out with contingencies for every possible disaster in place. One person walked ahead clearing the hallway and elevator, and one person trailed behind pushing the battery that powers the ECMO as a back-up.
It took 8 people to make the move down one floor. They did the job very well, and the ECMO coordinator actually told me it went as smooth as it possibly can under these circumstances.
The pulmonary artery cath was placed, and the initial information on pressures in the artery was positive. Now that the cath is placed, the docs can monitor the artery pressure constantly, which will give them more information on how the lungs are doing as they adjust ECMO flows.
So every good news is countered with the fact that they still don't know why exactly Clare's lungs don't work. All we can do now is hang on and pray that her lungs can heal.
Benno stayed today (after being up all night on his usual night shift next to Clare's bed) getting only about two hours sleep. He's home now until later tonight, then I'll go home to sleep before coming in tomorrow. This may make our updating somewhat erratic tomorrow.
Thanks for all the good thoughts and prayers today.
Karen
Tuesday, September 20, 2005 6:34 PM CDT
Day +64 Evening
Clare had an uneventful day today with her oxygen levels within parameters. Tomorrow afternoon she will go to the cardiac catheterization lab to have a pulmonary artery catheter placed. This catheter will enable the doctors to have a precise reading of the pressures in Clare's lungs. Any surgery is dangerous in Clare's condition, but the advantages of having this information outweigh the risks of surgery at this point.
Going to the cath lab on ECMO is going to be a production, to say the least. In the PICU, it's called a road trip. This road trip will entail a lot of people doing a lot of different things, all at once, down the hall, into an elevator, then down another long hall, then into a bay of the cath lab.
I can't quite imagine how this will be accomplished, but the PICU staff continue to amaze me in all things.
All of you continue to amaze me as well. Thanks for the thoughts, prayers, platelet donations (Patti G.! The Melkonians!), fabulous food, daily visits from Rev. Betty, and general support from everyone. Special thanks to the Sankars for taking in our cat for the duration, and not hating us because now the cat has a UTI--that's love, people.
Major excitement in the PICU staff lounge when the Monday night book group had pizza delivered. You have no idea how much they appreciate it. So do we.
Karen
Tuesday, September 20, 2005 5:54 AM CDT
Day +64 Morning
Clare's right pneumo is much smaller. Otherwise a quiet night.
Benno
Monday, September 19, 2005 6:13 PM CDT
Day +63 Evening
Benno and I met with the head ECMO PICU attending doctor today. Her decision was to keep Clare on the ECMO for a while longer to see if her lungs can recover. She is an expert, and very direct, which is both comforting and terrifying at times.
In any case, the doctor spoke to us about the negative and the positive, and we're still here.
Add St. Patrick's Episcopal Church to the list of places where you can give blood on Oct. 2. Email Rev. Paula Clark Green (greenp@stpatsdc.org) to schedule a time. The Cabin John Citizens Association blood drive is also October 2. Email Ruth Rabner to sign up--I'll post her address tomorrow as I don't have it handy.
Thanks so much.
Karen
---
Ruth Rabner's email is rabneroo@comcast.net.
Thanks to everyone who has given, or has arranged to give, blood or platelets.
B.
Monday, September 19, 2005 11:28 AM CDT
Day +63 Morning
On the doors of the cabinets next to Clare's bed is an accumulation of notes stuck there with tape. Some are typed, some are hand written. Slowly, it's getting bigger. There are notes that would be recognizable to you - lists of phone numbers, or lists of pager numbers. Other notes would be unusual, a schedule for Clare's splints, for example. Then there are the notes that would be more cryptic. Bed Zeroed. Pan Cultures. BMT Surveillance.
But all of these notes serve the same purpose: Telling the team things that they don't have time to look up. Because, when you really need the Fellow, you probably don't have a couple of minutes to look up the pager number. Or if it's your turn to do the weekly BMT surveillance cultures, you probably don't have a couple of hours to go up to Hem/Onc and down to the lab.
And once there is a note, then there are notes on the note. Clarifications. Additions. Corrections. Looking over at them last night, the notes on the cabinets are starting to get pretty complicated.
But notice how all this works. Somebody makes the time to figure out the problem, then writes a note for the cabinets. All this information may be repeated in the chart (Clare has two thick charts at this point, and they've both been "thinned" at least once.), but that's not the point. The point is to not have to look it up. Because when you're in the weeds, that little bit of extra time makes a big difference.
So someone writes the note, or adds the clarification and passes the saved time on to the next person. Now think about this from our point of view. They're really passing time on to Clare.
In another part of the hospital there's a full sized mockup of what the rooms in the new ICU will be like. But it's all made of Sheetrock and plywood, so you can't tell what the finished surface of the cabinets and walls will be like. I hope they can take tape. Lots and lots of tape.
When Clare has a quiet night, this is the kind of thing you think about. Clare had a quiet night last night.
Benno
Sunday, September 18, 2005 6:13 PM CDT
Day +62 Evening
Last night's issues were caused by another pneumothorax on Clare's lung, but the good news today is that it seems to be resolving. The bad news is that she keeps having these. We assume that tomorrow will bring more difficult decision making in the light of that fact.
Today she did fairly well with some lower vent settings, which was encouraging. Clare will be getting two sets of platelet transfusions per 24 hours for a while as the bleeding from the A-line site continues to be an issue, although it was much better today.
If you can possibly donate blood products, be it here at Children's, or at the Red Cross drive in Cabin John on the first Sunday in October, or really anywhere, please do. I can't possibly tell you the importance of that act of community service, but know that it goes to a good cause wherever it goes.
Phoebe is back from her overnight with the Girl Scouts, and I'm ready to hear more stories once I go home.
Karen
Sunday, September 18, 2005 6:27 AM CDT
Day +62 Morning
Pretty much the same as Day +52 Morning, almost to a person. And same responsive, supportive care. Today will be looking into a cause.
Benno
Saturday, September 17, 2005 9:36 PM CDT
Day +61 Evening
It's really hard to quantify a "good day" in the PICU, because the underlying reason that Clare is in there is so far from "good," it seems ridiculous that there could be a positive side. I remember that Benno has written about the "good" day in the PICU before. If it wasn't so late, I'd go back through the journal history and look for that post.
Anyway, last night and for most of today, the sedation worked, and Clare rested. When she comes out of sedation she is in a lot of pain, so everyone moves pretty quick to get more sedation. Clare still will answer some yes or no questions, and opened her eyes yesterday for a quick look.
So it was a good day. And better than the day before.
Karen
Saturday, September 17, 2005 10:16 AM CDT
Day +61 Morning
Clare's Index
Number of hours sedated and resting during the night: 8
Range of O2 sats during this period of rest: 95 - 100
Number of times desating due to problems with the new sedation: 1
Minutes until boluses of sedation took effect: 15
Number of boluses used to resedate: 4
Minutes until sats return to previous high: 15
Number of times suctioned: 3
Average time in minutes for sats to return to pervious high: 5
Lowest vent 02 setting during night, in percent: 40
Number of dressing changes on wrist due to oozing: 3
Number of dressing changes on toes due to oozing: 1
On a 10 point scale, amount of parental relief after a night of rest: 10
Trips by parent to chapel during night: 2
Visits in morning after night shift by rector: 1
Distance in miles around perimeter of medical center: 1.1
Number of times walked in morning after night shift by parent: 3
Chance in percent of wife spotting husband during walk and picking him up: 100
Benno
Friday, September 16, 2005 6:40 PM CDT
Day +60 Evening
Clare had a busy day today, and unfortunately, it shows. The ECMO circuit was successfully changed out. This seems to be a procedure that is fairly simple unless it is really hard, if that makes any sense.
When the 11th person entered the room, I took the advice of the ECMO nurse, and stepped out. Benno and I tend to stay in for most procedures as per Clare's desire, but she was completed sedated this time. None of the staff really wants to make us leave, but in this case it totally made sense to go.
I don't know if it is a matter of the new circuit, or of Clare's rapidly growing tolerance, but sedation remains a huge issue. She has been switched back to Dilaudud (sp)to go with the other sedation, but I'm not so sure that she won't be back on the Pentabarb pretty soon.
Phoebe is off to Ocean City for an overnight this weekend with the Girl Scouts. I hope they have good weather for a last fling. We had such a good time last summer in OC with Troop 432, so I'm sorry to miss it this year. The troop moms are an awesome bunch, and I so appreciate all the support they've given our family lately.
Karen
Friday, September 16, 2005 9:48 AM CDT
Day +60 Morning
Clare continued to ooze last night. Her mouth, her right wrist, and her right thigh all have small cuts or tears in them and thwarted a series of carefully applied dressings.
Along with that, her PO2s were off all night, so by the end of the night her vent O2 was set to 100 ("Here I am again!") while her sats come up, then she'll be weaned down.
But a pneumo that was developing in last night's x-ray has resolved itself in this morning's x-ray.
Sometimes it's hard to understand what Clare is telling us.
Benno
Thursday, September 15, 2005 6:19 PM CDT
Day +59 Evening
Better day today than yesterday, but Clare is still having many sedation issues which is truly frustrating as it affects her oxygen levels so profoundly. We're hoping for another calm night to bring her back to a good level. Tomorrow will be stressful as the plan is to change out the ECMO circuit.
The next grandparent shift has begun as my mom is back in Pennsylvania and Benno's parents have arrived. We so appreciate our family filling the gaps for us, especially on the Phoebe side of things.
Karen
Thursday, September 15, 2005 10:12 AM CDT
Day +59 Morning
It's hard to be away from Clare. It's hard to be away from Phoebe. That's why we take shifts.
Since Clare went on the ECMO pump, our place has been at the foot of her bed, on the left side, facing her head. Remember the right side is the ECMO side and you don't want to touch any of ECMO's stuff. We sit with her, holding her hand. If she wakes up enough to look around, we want her to know we're there.
Coming back to the room last night, Clare's nurse, unasked, had taken my place in the chair and was holding her hand. If Clare woke up, our nurse wanted her to know someone was there. Along with all the science and medicine, this is the kind of care that Clare is given.
If only we could sit at Phoebe's side all day as well, holding her hand, so she knows we're there. But we can't and so many of you, unasked, have taken our place and are holding her hand as well. So Phoebe knows someone is there. Again, thank you.
Clare had a good night once she bounced back from the procedures of the day. This took several hours and several doses of pain medication. And she's still oozing at her wrist, on her hip and now in her mouth, but this should be resolved with the large dose of platelets she was given this morning.
Benno
Wednesday, September 14, 2005 6:02 PM CDT
Day +58 Evening
A hard day today as another pneumo-thorax opened up on Clare's right lung. The decision was quickly made to put in a chest tube to suction out the air surrounding the lungs. By 4pm, the tube was in and hooked up, another x-ray was taken, and the doctors were able to report that the pneumo-thorax had closed up.
Clare'll keep this tube in for the foreseeable future as it has become clear that she could have more of these develop in the future. Removing it is also too much of bleeding risk.
My head is spinning a bit, but we're still trying to take the bad days in stride. Thanks for checking in.
Karen
Wednesday, September 14, 2005 10:39 AM CDT
Day +58 Morning
Clare slept pretty well last night, but there are signs that the sedation is losing it's effectiveness. Heart rate goes up. Eyes open. Yesterday the pain team consulted on changing her sedation meds and proposed some changes.
The other night one of our nursed warned us that the list of sedation meds would get much longer as Clare continues to be on the ECMO pump, so fortunately, we're not too surprised by the new recommendations.
Clare's feet were also giving her a little trouble, they'll be looked at today.
Otherwise, more resting, more waiting.
Benno
---
Many thanks to my book group at St. Pat's for sending their good wishes, and to Marjorie for bringing the book, having a quick conversation and praying with Clare yesterday morning. It's nice to hear from our old routines, and incorporate them into our new ones.
Tuesday, September 13, 2005 6:18 PM CDT
Day +56 Evening
Clare's BMA site is better, and no one seems too concerned about any oozing. Just a parent thing, I guess. More tests on the marrow are back that confirm her remission, and we should get the tests results on her percentage of donor cells later.
Today was all about resting and dressing changes. Life in the PICU swirls around us. New monitors are installed in some of the rooms out in the open part of the PICU, and we can faintly hear the drills. New admissions come into the NICU and we can look through a narrow window as they are walked into the neighboring room.
And we still sit by Clare's bedside, waiting on those lungs to heal. Thanks for waiting with us.
Karen
Tuesday, September 13, 2005 10:48 AM CDT
Day +56 Morning
When you're heparinized and you have an invasive procedure - like the bone marrow aspiration Clare had yesterday - you can ooze. Anywhere else you might call this bleeding, but when you're heparinized, you call it oozing. You don't want to know what it's like when you call it bleeding.
Clare's BMA site oozed all night, but by the morning, thanks to the nurses' close attention, it was slowing down. It seems like the cannulas took a few days to stop oozing too. So everything is normal, but it's one of those times where you have to keep reminding yourself that it is.
Otherwise a quiet night. Clare slept, except when we woke her up to check in.
Benno
Monday, September 12, 2005 9:33 PM CDT
Day +55 Evening
Clare had the bone marrow aspiration done today. We are very relieved to report that no cancer cells were detected in the marrow. We weren't expecting that Clare had relapsed, but it was still a huge relief to know that for sure. More information from the marrow will be available tomorrow and later this week after extensive testing.
So, for this week the plan remains the same: more time on ECMO resting Clare's lungs. She spent a lot of time today recovering from the procedure. She has no "bounce" and just about anything done to her: dressing changes, bed changes or anything, just makes her oxygen levels dip. The pneumo-thorax in her left lung has closed up completely.
Thank you so much for all the heartfelt prayers today. I understand that the service at St. Pat's was beautiful. Benno and I both gather such strength knowing that friends and family everywhere near and far are with us in this hard, hard journey. And reading the guestbook: thoughts and prayers at exercise class! I've often prayed during that class, (prayed that Judy would stop with the lunges already), and it pleases me no end that they held us up today.
We are blessed in our family, our community and our friends. I can't say it enough.
Karen
Monday, September 12, 2005 7:32 AM CDT
Day +55 Morning
Good night. Quiet night. Clare's sedation issues have been worked out - at least until the pump chews up her new meds, or until the her pain increases again. Anything to keep her asleep.
Thinking of you all thinking of Clare this morning.
Benno
Sunday, September 11, 2005 9:13 PM CDT
Day + 54 Evening
We had a day of sedation issues today as when Clare was at all wakeful, her oxygen levels would drop rather dramatically. Since she is supported by ECMO there isn't immediate danger from lack of oxygen, but it is still a worrisome thing for everyone in the room, the mom in particular.
So, they added some more sedation to the mix, and that calmed Clare so that she wasn't breathing over the vent. It is very hard not to have her at all conscious for so much of the day, but it really is the only way to manage her situation right now.
Tomorrow morning will be the first bone marrow aspirate since transplant. We should have preliminary results back fairly soon that will confirm that Clare is still in remission from her leukemia, and hopefully have other information that will help Clare's doctors plan further treatment.
Thanks to all who will hold Clare in thought and prayer tomorrow morning at 10:00am. We truly appreciate it.
Karen
Sunday, September 11, 2005 9:32 AM CDT
Day +54 Morning
Let's see. Quite night. Clare was cleaned up once. Good recovery. No bed change. No bath. Good PO2s all within range (60-80) except one that was in the high 300's, but that's 15-year-old-single-malt ECMO blood coming right off the pump. We don't pay attention to those.
Clare was wakeful last night. Looking around. Answering questions. That's a bad sign. It means her sedation is getting stripped out by the ECMO pump again. The next thing that happens is that she gets anxious about where she is, and then she really starts to feel the pain.
So her sedation, currently 1.2 mg/kg/hr of morphine and Versed (Extra credit: Clare is 28 kilos, see if you can calculate her boluses. Ask a medical pal if you need to.) was expanded to include Fentanyl and Valium. An impressive mix for a 7 year old girl. But I'm told you need to figure that a third of it's being stripped out by the pump.
And it worked. Clare slept well, and when I left, was sleeping well.
Tomorrow is an important day for us, but today is September 11th. We know that you'll be thinking of Clare and praying for her tomorrow. Today, please remember everyone touched by this day four years ago.
Benno
Saturday, September 10, 2005 7:50 AM CDT
Day +54 Morning
Got our wish. Again.
Another good night where Clare slept, was suctioned and had a bath all with little impact on her sats. And as a bonus, when she was suctioned this morning a fantastic little plug of mucous came up her tube. Sorry, hope you’re not eating breakfast or anything. We live for the disgusting goo that comes out of our daughter’s lungs. And you should see how happy Clare's nurses are.
Many thanks to everyone who wished Clare well at the Back to School picnic last night. And many thanks to everyone who is keeping an eye on Phoebe while we all struggle with the good and bad days we are having. She is very much with us in all of this and that’s a lot for anyone, let alone a nine going on ten year old.
It was good for me to see you all and remind myself that she is hardly alone. Someday we will sewing up (actually, knowing my girls, we’ll be knitting up) all that has unraveled these past months, and it will be so much easier because you have been taking care of our girl.
As Karen has said, we are trying hard to keep our faith. I think Monday at 10:00 AM keeping it will be a little easier.
Benno
Friday, September 9, 2005 6:29 PM CDT
Day +53 Evening
The good news is that the pnuemothorax on Clare's lung is smaller today, and seems to be resolving. The chest x-rays are otherwise unchanged, so we continue to wait on Clare's lungs while they rest on ECMO. The days and nights are long, but with a certain rhythm as we continue our 12 hour shifts bedside.
Phoebe, Benno and my mom are off to the Back to School picnic tonight as we continue to try to balance home and hospital. Phoebe is being a truly mature member of the team as our home life is fractured at this point. We are so grateful for my mom (Benno's parents are waiting in the wings for next week) in helping us bridge the gaps at home.
If you read the guestbook, you can tell that our families are spread over a wide area. The Cabin John community is well-represented as is the Bannockburn Elementary crowd and the St. Patrick's faithful. You can probably recognize the Children's Hospital folks (staff and families) as well.
The names that may not seem familiar are those that come from the extraordinarily well organized on-line parents of chldren with cancer group which has been a support to us for years now. These are the people from all over that I've emailed since Clare was first diagnosed in November 2001 about all sorts of cancer issues, and their support during this crisis has been most helpful.
Several from that email list have asked for a set time to pray, light candles, hold Clare in your thoughts . . . whatever works for you. Monday is another big decision day for us as far as where Clare's treatment will go, so if you're so inclined, please hold Monday morning at 10:00am on your schedule for us, for a brief moment, to keep us going on what we face ahead.
Trying hard to keep the faith,
Karen
Friday, September 9, 2005 8:02 AM CDT
Day +53 Morning
Last night was a good night. I’ll take a million more, please.
Clare slept. Clare coughed. Clare got suctioned and a lot of clear gunk came up. Clare didn’t desat. Clare rolled back, and forth, while her bed was changed. Clare didn’t desat. Clare’s PO2s were good all night long.
The bad days are bad. You can’t make them anything else. The good days? They’re really good. You shouldn’t make them anything else.
Last night was a good night. We’re thankful for that. Now we’ll see what today brings.
Benno
Thursday, September 8, 2005 9:36 PM CDT
Day +52 Evening
An ultrasound today of Clare's lung showed that there is no fluid, which is very good news. The pneumothorax is still present, which is very serious. I was heartened by the fact that they didn't call for an extra x-ray tonight to check on it, but were content to wait for tomorrow morning's regularly scheduled x-ray. We look for our good news, because it doesn't seem to be knocking on our door these past few days.
Clare is resting very comfortably, and that makes the bedside watch much easier on us. Today they changed all the bandages on various entry sites. Finally, infection prevention won out over possible bleeding issues which to a bone marrow transplant parent (i.e. germ paranoid) was very gratifying.
Bottom line: wait and see what tomorrow brings.
Karen
Thursday, September 8, 2005 10:20 AM CDT
Day +52 Morning
What next?
One thing we haven't mentioned in the journal was the day that Clare had a pneumothorax, a leak in the lung that lets air collect in the space around the lung. It appeared in a morning x-ray, her vent settings were reduced, and it resolved itself during the course of the day. She was also put on nitric oxide around that time, to improve her lungs profusion, which may have also helped.
Anyway I couldn't even tell you what day it was without looking in our notebook because you have to focus your energy on the ongoing problems, not the ones that get resolved. Of course, when they come back, then you scramble back in the notebook (the last pneumothorax was five days ago) to remember what happened in the first place. Then you need make room for the problem again.
Yesterday morning's x-ray showed that a pneumothorax was gathering, which meant that Clare would be monitored with x-rays. When the results came back from the 8:00 PM x-ray, at 10:00 PM, the pneumothorax on her left side of her chest had reappeared. And it was big. More ominously, her right lung was also whited out - meaning it was possibly full of fluid, or collapse. Immediately the settings on Clare's vent were reduced, and the ECMO flows were increased to compensate for the work the lungs now weren't doing.
What next?
Ask for a little more background. Here's something interesting about a pneumothorax. If it gets big enough, it can start to move things around in your chest. The air that leaks out from the lung has no where else to go if it's not reabsorbed, so it starts pushing things around, like your heart, and that's called a tension pneumothorax.
The solution to a tension pneumothorax, is to put in a chest tube to relieve the pressure. I learned something about chest tubes last night, it's a tube that comes out of the side of your chest through a dressing, and goes to a vacuum box on the floor which draws the air out of the chest. Chest tubes can also be used to drain fluid.
But if you remember an earlier post, Clare has been heparinized (now's the time to google heparin, if you didn't last time), so NOBODY wants to put in any chest tubes.
What next?
Listen to what solutions are being considered (chest tube). Then listen to the risks (heparinization). Then think about what you'll need to do (call Karen, sign consent forms) And then, you wait. Which, to be honest, is - well it's hard. Don't think you're going to get any of that paper read. I recommend nervous, possibly incoherent, conversation. And go to the chapel.
So we waited for another x-ray to be ordered, shot, and reviewed. Now it's 1:30 this morning. This x-ray? Well, fortunately, it was an improvement. On the right side, the outline of the lung had reappeared through the white out. And while the pnumo wasn't smaller, it wasn't bigger. Most importantly, I think, based on my crash course in pneumothoraxes, there was only a little tension. Almost not worth mentioning. Go to the chapel again.
What next?
Wait for the next x-ray. So if this is taking on a wash-rinse-repeat quality, and you just want to get it over with, focus on the heparinization. It's good to wait. It's good to be sure. So the next x-ray was shot at 5:30 this morning, and rather than getting the boot during rounds at 7:00, Clare's team had me wait for the results. And the x-ray was better. But if you remember anything about hearing the results of an x-ray described to you, remember this: "Better than what?" In this case the answer is, better than the previous two x-rays.
What next?
That's when you go get breakfast. Have some coffee. Call Karen. Fill her in on what she may be dealing with today. Then post in Clare's journal. Then get some sleep, because you never know what's next.
Benno
Wednesday, September 7, 2005 6:18 PM CDT
Day +51 Evening
Another day of resting, albeit one with the usual ups and downs in oxygen levels, blood pressures, and heart rate. The nurses and doctors have begun to just say "well, that's Clare," when faced with changes that don't really have any clinical reason behind them.
Today, the attending asked very politely if a couple of resident doctors (i.e., the new guys) could come see an ECMO in action. So we had a little class right at bedside which was pretty interesting. I'm always looking for those opportunities to learn and ask questions.
Of course, I'm ready for some answers now too, but we're still waiting on those.
Karen
Wednesday, September 7, 2005 7:56 AM CDT
Day +51 Morning
Nights are different. Sitting in the procedure room with Clare at night things are quieter - I mean - nicer. Good PO2s. Warm baths. Easy bed changes. Little conversations with Clare. All night. Days don’t seem to be like that. Rough spots break up the good stretches of the day. PO2s drop. Heartbeat slows. Blood pressure changes inexplicably. All day.
It’s strange. Clare is in a brightly lit, windowless, HEPA filtered procedure room. There is nothing that can tell her what day it is, let alone what time of day. But it’s as if she knows. Most days she’s active. Most nights she rests.
But nights can have their own problems when things start to seem circular. Clare was coughing a lot last night. Filled with junk. You can feel it if you touch the side of her chest with the backs of your fingers. Drops her sats. To raise them again her ET tube is suctioned. Clears all the junk out. Except that suctioning also lowers her sats. So to make her sats higher, you have to lower them. See? It goes in a circle.
Karen likens this all to a roller coaster because of the up and down quality of the days, but as long as we’re thinking about amusement park rides, I’d say it’s more like a carousel, albeit a somewhat infernal one (Infernal Carousel. Band name.), because of the “Here I am again!” quality of the nights.
While Clare is resting, while we are waiting, while the plan stays the same, we’ll see what today brings.
Benno
Tuesday, September 6, 2005 6:29 PM CDT
Day +50 Evening
No weaning off the ECMO for a couple of days as the attending doctor now on service feels that Clare is not ready. After a lot of consulting back and forth, the ECMO circuit was not fully changed out today as the professionals felt that it was in good enough shape to last until Friday when further decisions will be made.
The general feeling in the room today was that while Clare has not made any progress, she has not lost any ground either. The doctor felt that Clare tolerated the weaning done in the last two days well before plateauing, so we'll take it up again after more days of rest.
Benno and I feel like the plan changes with every doctor that walks in the room, but now we seem to have the ECMO guru back in town, so we're feeling somewhat confident about this version of the plan.
So we continue onward, truly facing each day as a separate entity. I recognize some of the other long-term parents now, and we carefully ask about each other's children. We're all careful not to share too much of the burdens, and quick to tell the good news. It is an odd, but good sort of hall way and waiting room community, probably only found in hospitals like this one.
Karen
Tuesday, September 6, 2005 8:00 AM CDT
Day +50
PICU +31
ECMO +16
Morning
After a day of weaning and a day of rest, Clare was stable last night and her PO2s were all within range. The plan for today is to switch out her ECMO circuit, which may set her weaning back a few days as the new circuit is adjusted. So we’ll continue to wait, pray, sit with her, hold hands, talk with her when she comes up out of the sedation and let her sleep when she goes back down.
And we'll read, and we’ll talk with Clare’s nurses who, for the last month, have probably spent as much time nursing us as they have nursing our daughter. It must be hard, I think. And we’re so grateful to them because they must be getting a little tired of us. Like houseguests and fish and all. So, a new list.
Benno
You Know the PICU Has Putting Up With You For Too Long When
> You know what TPN smells like.
> The doors just open after you call to be let in.
> You start substituting the word “nice” for the word “quiet”, as in “nice night”.
> Changing the name to “Go Abruptly” sounds like really good idea.
> You make PICU checklists
> With a paper towel and two pieces of tape you try to fix the procedure room sink.
> You know the waveform on the art line has whip in it.
> Unconsciously you hold your breath when the CVVH goes into self-test.
> You think “Hospital Pants” would make a great band name.
> Larry brings you a brownie.
Monday, September 5, 2005 10:15 PM CDT
Day +49
One of our favorite nurses has said to me several times in the last few weeks that "the doctors think they are in charge, and sometimes the nurses think they run the show, but really it is the patients that tell us what to do."
That was very much the case today when all weaning off the ECMO was stopped this morning when Clare's oxygen levels in the blood gasses dropped below the parameters set by the doctors. So it was a day of waiting, staring at the monitors, and waiting some more for the numbers to read as they should. Waiting for Clare to tell us that it was time to make the change.
So more ECMO decisions to be made tomorrow, but not any chance Clare getting off the machine in the next day or two. Watch, wait and pray--that's all we do now.
Many, many thanks to our rector, Betty McWhorter from St. Patrick's, who has visited us every day since Clare was admitted to the PICU. She has been a true example of faith in action for us, and we really appreciate it.
Karen
Monday, September 5, 2005 9:26 AM CDT
Day +49 Morning
The weaning from ECMO continued successfully throughout last night. Every hour the flow of blood to Clare's body was turned down in increments of 20. Every two hours a blood gas was taken. Since midnight last night all of her PO2s have been within range.
12:00, 1.28, 084
Care's treatment has reached the point where it's less about the science of medicine and more about the art. Numbers give way to experience and observation, to craft and experimentation. This has been hard for us to reconcile at times. The art of medicine.
02:00, 1.24, 067
Numbers vs. Clare. How often during the last month in the PICU has a nurse gently told us, "Stop looking at the monitors and look at your daughter. You know her better than I do. Tell me what she is telling you." And to be honest, it's been that way all along during the four month run-up to where Clare is right now, to coming off ECMO. Clare vs. numbers.
04:00, 1.20, 152
Numbers are hard and cold. We gave up on percentages when Clare relapsed. Traded them in for either/or, as in "Either Phoebe will be a match, or she won't." And now even saying that has become too complicated. To think about either and or takes too much energy and is too much of a distraction.
06:00, 1.16, 098
So there are other cold calculations we could be making, but right now we're not. We need all our energy and our clarity for our faith, and through that our hope. Thanks to you - all of you - we have those. And we have the girl whose hand I am holding as I write this in our notebook.
08:00, 1.12, 156
Benno
Sunday, September 4, 2005 9:32 PM CDT
Day +48 Evening
Today they started gently weaning Clare from the ECMO machine, very slowly turning it down every hour. They will continue to do that through tomorrow, with Tuesday morning being the test of how Clare will do without the support of the ECMO oxygenating her blood for her. So far today she did fine with it, so we continue to just pray that her lungs will be able to handle their job this week.
As you can tell from this morning's entry, Phoebe visited Clare along with Grandma Melchar today. It was a very short 5 minute visit, but Clare always opens her eyes to her sister's voice. Believe me, it's not an easy room to walk into with all the machines, so I'm very proud of Phoebe for being such a great sister.
Again, many thanks for the great care and support from all of you reading this journal. I'm overwhelmed every time I read the guestbook, and so glad to hear from everyone.
Karen
Sunday, September 4, 2005 9:37 AM CDT
Day +48 Morning
Dear Clare,
I visited you this morning in the PICU. The medicine doesn't make you relax your eyes all the way, so when you close your eyes I can sort of see your eyeballs without your pupil, which is creepy. The nurses were sitting around you and the room was crowded with all the machinery. Squishy (Maddie) and I made you a bear from Build-A-Bear. The bear is dressed in a hospital gown and is perched on your bed.
I miss you.
Love, Phoebe R.
P.S. The nurse painted your fingernails purple.
Saturday, September 3, 2005 10:08 AM CDT
Day +47 Morning
We sit on the opposite side of the bed from the ECMO machine, on Clare's side. The other side of the bed? That's the ECMO side. It's like two sides of a boat. Actually it's more like two sides of a bedroom shared by teenage siblings, because you need to keep your hands off the ECMO side.
So here's what happens on the ECMO side. There's a tech. They watch the machine like it's Clare, which is great, because there's plenty of Clare in it right now. And now. And now. And again now. If you're the ECMO tech, you don't leave the room. You call for a replacement, brief them on the machine and then you leave. Even if it's just to go to the bathroom.
Like any other procedure, or treatment, the ECMO has many masters. There's the tech, and the doctors and the profusionist who sets up the circuit. And to be honest, sometimes it's hard to know who you should be listening to. Although we've been told - for the past couple of days - that the ECMO circuit would be changed out yesterday, when it came time to change it, nothing happened. It didn't need to be changed. Not sure why. Wasn't listening to the right person. Next time we'll know.
Which is to say, having Clare on ECMO is like the the joke you tell after you renovate your house. Next time we'll know exactly what to do, except that we're never doing this again. Actually, it's all like that. You start writing tips for being in the PICU, then you say, "Why am I doing this?" and you stop writing. And then you say, "Well. I wish I had this list when I got here." And then you start writing again. See? It goes in a circle.
Clare had a quiet night. Her sedation is in the sweet spot. She doesn't fight the vent. Her PO2s were good.
Benno
Friday, September 2, 2005 10:35 AM CDT
Day +46 Morning
Even For Today
At this point, who in this hospital doesn't ask about Clare? Who doesn't knock gently on her door and stick their head in? Who doesn't wave in the cafeteria, or nod in the hall? And I'm on nights. Imagine what days are like. Clare's doctor called the procedure room, where Clare is getting ECMO, at 12:30 this morning to see how she was.
For the past day the PICU team has been working on weaning Clare off the ECMO pump. This needs to happen. The longer Clare is on the pump, the more the risks outweigh the rewards. That doesn't mean that there's a hard deadline, but like so many other machines in the PICU if you're not coming on then you're coming off. There's no in-between.
The problem Clare has is really the problem we all have. She's different. From everybody else. The question in the PICU has never been, "How do we get a patient off ECMO?" the question has always been, "How do we get *Clare* off ECMO?" How do we make Clare well?
To wean Clare, the flow of blood through the ECMO pump is reduced, making her body do more of the work. Yesterday Clare's weaning lost some ground. Last night the weaning made some progress. Today could be completely different. Because Clare changes everyday. Because she's different. Sometimes it seems like she'll get off ECMO soon. Sometimes it feels like she'll never will.
I hope she makes more progress today. When I go back to the PICU tonight I'll see how she did. That's just the way it is. But, unless I miss my guess, I'm pretty sure her fingernails will be purple. More on that later.
Benno
---
One of the reasons Clare was put on the CVVH was that she was holding too much fluid. Along with filtering her blood, or performing dialysis, the CVVH can take off fluid. This can be an all day process as the fluids going in with her medications must be constantly measured against the fluids being taken out. If the ins match the outs at the end the end of the day, then Clare is "even for today".
Thursday, September 1, 2005 6:26 PM CDT
Day +45 Morning
Clare wasn't clamped yesterday as her PO2s didn't merit the test. So she rested. I obsessed about her O2 sats. When it's 3:00 am and I've given up on staring at the monitor and trying to will Clare's O2 higher, I start to make little lists. Here's last night's.
Things You Want To Have If You Ever Find Yourself In The PICU
A Pen That Writes On Paper Towels
Folded paper towels are the yellow sticky note of the hospital room. Every room has them. And everyone writes on them. You will too. Most pens should write on them, but that mechanical pencil you like? Just throw it away.
A Bottle Of Water Times Infinity
Because there's no point in me listing caffeine. But after you're done trying to power through the crisis by drinking your beloved coffee and coffees, you'll be wanting that bottle of water. As added incentive, hospitals are really, really dry.
Lots of Numbers
Birthdays, social security numbers, phone numbers, number of allergies. You will be filling out forms. Promise.
Five Minutes of Natural Light
Stand next to a window. Or step outside if going that far isn't going to freak you out. You really want to keep track of time in the big way that you do when you look at the sky not the little way that you do when you look at your watch.
Pre-Digested Food
Like bananas. You need food you can eat really fast and not get a stomach ache that has some quasi-nutritional value. Sports bars. Trail mix. Water.
Location Of Important Things
Rest rooms. Chapel. Cafeteria. Chairs that recline. Then you string them together. Bathroom. Prayer. Diet Coke. Bedside.
Notebook You Can Beat Up
All the hem/onc-ers have a notebook, so I never would have thought of this one, but the PICU people say hem/onc-ers are the only ones who keep one. You need a place where can write down all the important stuff that's too hard to process right now. Then obsessively reread it. Then write down all the questions you have. Make sure it has hard covers.
Magic Bullet
You have to make this one. Mine has the following: two Advils, two Sudafed, and two pieces of gum. Figure you've got 12 hours to get through, then put in what you'll need if something goes wrong. Like Tums. And water. Have I mentioned water yet?
Pullover/Jacket
Hospitals are cold and anyone who says otherwise is a liar. Look at it this way, if you're going to start sleeping in chairs, you might as well have your favorite Polartec on.
Hand Lotion
You are about to wash your hands to the point where your skin will crack and bleed. All the way to your elbows. That fancy lotion you're too cheap to buy? Get that one.
The Thing That I'm Missing
Chocolate. A pocket knife. Contact case and saline. Comfort reading. I know I'm missing all kinds of things. Add your favorites here.
Benno
Wednesday, August 31, 2005 10:21 AM CDT
Day +44 Morning
Yesterday afternoon Clare was given her first evaluation test for getting off ECMO. Her lines were clamped, she was taken off the ventilator and hand-bagged. Clare hates being bagged, and fights each forced breath. Anyone out there had an ET tube and been bagged? Or just been bagged? How bad was it? It seems bad.
During the clamp, Clare's blood gas was taken from her arterial line. Because she was fighting the bag so much her PO2's were low, but not low enough for her to fail the test. So she's taken the first step to getting off ECMO. We're all watching the clock, though, because her ECMO circuit - while still functional - is reaching the end of its useful life.
Clare's sats continue to be precariously balanced between good and bad. Any movement - a bath, a bed change, getting cleaned up, can bring them down. It was these low sats that postponed the test during the past few days. They make Clare look like she's not ready.
So the team proceeds carefully. There were no more tests. As much as possible they avoided anything that would bring her sats down. It feels like watching a battery charge.
Last night she rested. Today Clare will continue to be evaluated.
---
The ECMO pump eats pain medication. The more time on the pump, the less effective a dose of pain medication becomes. The CVVH also contributes to this. They're both filters, so naturally things get caught in them. And having to keep your legs still for ten days because they've been catheterized? That's really painful.
So Clare's drips have been upped several times. But even with all the steadily increasing pain and sedation medication - at one point I asked what would happen if I was given the dose Clare is getting, and was quickly told it would probably stop my heart - it's hard to imagine how Clare rests.
Because the procedure room is brightly lit. Clare and all her equipment must be closely, constantly monitored. Even then the ECMO tech regularly uses a hand light to examine each line and component of the pump to make sure that there isn't any clotting.
As best as they can, the nurses have been trying to recreate day and night for Clare, but in a windowless room with bright overhead lights on all day it's pretty difficult. And Clare doesn't help. Every night we ask her if she wants the lights turned down, and she always shakes her head no. Over and over. She's very clear about it.
When she relapsed, Clare started to insist on watching the procedures that she was getting (Cancer Parents: Clare had to see her PEG shots, or she would get really upset. For the BMAs, well, she just got really upset.) and I wonder if she's afraid that in the low light something will happen that she can't see, something that she won't be ready for.
Not happy with the fluorescent lamps shine down into Clare's eyes, but wanting to assuage her fears, the nurses fold a baby blanket over her, shading them from the overhead light, but still letting her look out.
You have to bend over and look in to see if her eyes are open. But from the chair next to the bed where Karen and I sit, holding Clare's hand, you can see right in. So one of the nurses has taken to asking me, "Look in Clare's hut and tell me if she's awake." It makes me imagine a village of tents made from flannel with little ducks and stripes on them.
---
At night I read as much of as many newspapers as I can, to stay awake. Last night I had to appreciate that my daughter's hospital had a roof, wasn't flooded and that we didn't need to be evacuated in a boat. At this point, with all of the mechanical support she depends on, I can't imagine how any of that would be possible.
This isn't the first time we've asked you to turn your prayers and support away from Clare, and it probably won't be the last. But we are rich in both. As hard as the last few days have been for us, there are thousands of people whose days have been much, much harder. I hope they are taken care of as well as we have been. Your support and prayers are so powerful. If you can, give them to the other people who need them today.
Everything is relative. Last night sitting in a hospital procedure room with three units of my daughter's blood flowing through a machine at any given time, I still felt that she was very, very safe.
---
We're a little melancholy today as one of our favorite doctors, who has been with Clare since she came to the PICU, has finished his rotation and is returning to NIH. With rotations through the unit and a different way of scheduling days and nights on duty, your relationship with doctors is different in the PICU. We'll miss the continuity.
---
Karen brought in her laptop yesterday in case Clare wanted to watch a DVD. I've been sitting in the cafeteria with it and a triple shot expresso for the last three hours - the time between leaving for shift change and Karen's arrival. Can you tell?
Benno
Tuesday, August 30, 2005 8:09 AM CDT
Day +43 Morning
Every morning there is a truck that backs down the exit to the hospital parking lot until it reaches a dumpster. The parking lot is being repaired, so a day’s worth of jackhammered concrete is sitting in the dumpster waiting to be taken away.
At 7:00 AM I come off shift when the night nurse transfers Clare to the day nurse. Although I could probably talk them into letting me stay, it seems better to give them the time to discuss the details of Clare’s care without the distraction of an exhausted, anxious parent. It seems like a good time to get a cup of coffee.
The only place in the hospital I can take a break in anymore is the cafeteria, which has floor to ceiling windows running along two sides. All the other waiting rooms in the hospital seem too small and dark after sitting in the PICU’s windowless procedure room for the better part of 12 hours. The best tables in the cafeteria are in the corner where the two glass walls meet. You can look through the trees and see the reservoir across the street. There’s a lot of outside light.
This corner of the cafeteria sits right above the exit to the parking lot, so you can also see the truck back down the driveway, pick up the dumpster full of jackhammered concrete and drive it away. It’s strangely satisfying. You can see the junk in the dumpster and you can watch it get taken away.
The junk in Clare’s lungs is neither so visible, nor so easily taken away. While machines support Clare’s body, the junk sits in her lungs and nothing drives it away. Looking at her x-rays, one of the puzzles of Clare’s condition is that her lungs are unchanged. When she was briefly better, they didn’t change. When she eventually got worse, they didn’t change. When she’s suctioned they don’t change. While she rests, they don’t change.
While x-rays are not the only tool that can evaluate the condition of Clare’s lungs, and they are not the best way of measuring changes, watching the junk from the garage is as simple and satisfying as watching the x-rays of the junk from Clare’s lungs is complicated and frustrating.
After a quiet and uneventful night the plan today, as it has been for the past few days, is to clamp Clare off from the ECMO and see how she responds.
Benno
Monday, August 29, 2005 9:28 PM CDT
Day +42
Another day gone by without the evaluation of whether Clare is ready to be weaned off the ECMO machine. Once again, her blood gasses, blood pressure and heart rate were not where they had to be in order to have the test.
Frustrating? Why, yes indeed. All of those things were in fine shape all night, and it wasn't until it was time for the test that it all fell apart. So maybe tomorrow will be test day.
When Clare surfaces from the sedation, she is letting us know that she is unhappy and uncomfortable. The Versed takes away short term memory, so we have to explain again and again that she is in a special part of the hospital, that her lungs are sick and need to rest by using the ventilator, and that we hope to get her out soon. It's like a nightmare version of Groundhog Day for us.
The nurses are encouraged by Clare's restlessness and need to communicate. They assure us that as hard as it is to witness, it means that she is trying to heal.
So we hold onto that, and appreciate your continuing prayers.
Thanks to all for the food, and the stickie buns. My friend Lise sent them to the PICU staff, which was much, much appreciated, as were the brownies from Benno's mom. And someone else sent more stickies to home, which made us all very happy, but no name on the label so I can't thank you personally!
We have the greatest friends and family in the world.
Karen
Sunday, August 28, 2005 9:11 PM CDT
Day +41 Evening
The evaluation of how Clare will do off the ECMO didn't happen today after all. The doctor came in, the respiration tech was called, but the blood gas reading wasn't where it needed to be so they put off the test until tomorrow.
Clare had a pretty good day, which when you run it through the PICU translator means "nothing bad happened to the ECMO and the chest x-ray doesn't look worse." We had our particularly favorite nurses today, and that makes the day nicer as well.
Nice translating as "another day gone by and nothing bad happened."
Karen
Sunday, August 28, 2005 9:08 AM CDT
Day +41 Morning
After seven days on ECMO Clare will have her first evaluation today when the clamp her off and see if her lungs can compensate for the oxygenated blood that will be diverted back to the pump. The team will use the results of the evaluation to determine what the next step for Clare will be.
Benno
Saturday, August 27, 2005 6:10 PM CDT
Day +40 Evening
How is Clare doing?
How are her lungs? Any changes in her chest films? How does she sound? What comes up when she's suctioned? Any more bleeding? What are you seeing at the pump? Still having problems with the ACTs? Was the heparin bag swapped out? Any clotting? How are the venous sats? How are they compared to the sats on her side? How have the blood gasses been? How's her sedation? Is she awake ? Is she agitated? Have her drips been upped? Is she communicative? Is she aware of her surroundings? Does she react to you? Is she in pain? Is she still crying? What about her gut? Does she have bowel sounds What rate are her feeds at? Has the TPN been taken down? How much Miralax is she getting? Are you thinking about Go Lightly? Is the ND tube still in the right position? Has anything come up the NG suction? Did she vomit again? How much are you taking off with the CVVH? Is she even for the night? How's her pressure been? Did you add volume? Albumin or saline? Is she dry? How old is the the circuit? When will it be 72 hours? Has her BP been stabilized? What are her other readings like? Is the A line still acting up? Is Does it still have some whip? Is her pulse-ox showing anything? Have you tried other locations? Have you tried the ear? What's her heart rate doing? Any more bradycardia? What's her vent set at? Has the O2 been changed? What about the PEEP? What do her loops look like? Can she be weaned at all? How are her lines? Has the IJ clotted yet? Is the A line still oozing? Has the left cannula stopped bleeding? How about her skin? Still intact? Any more breakdown? How's that spot on her back? Has her forehead healed? Did the Nystatin powder clear up the infection?
How's Clare doing? It's become a pretty complicated question.
Benno
Friday, August 26, 2005 9:40 PM CDT
Day +39 Evening
Another day of the PICU roller coaster that just doesn't seem to stop. Clare had another round of dropping heart rate, low blood pressure, then higher blood pressure than normal. All happening in the course of about an hour and a half. There seem to be a variety of possible answers to this with volume issues and the confluence of the catheters in her neck, PICC line and Broviac so near her heart being several that were thrown around today.
So what can you do but stare at monitors and pray? The daily lung x-rays haven't shown any big improvements, but no backsliding either. So we just wait on Clare's lungs to heal, and hope that we continue to have time and technology on our side.
Thanks to all for the food and friendship as both continue to sustain us. Aunt Phoebe is taking good care of us all, and is becoming quite the suburban mom as she made a star appearance at the Bannockburn Elementary School Open House today. We couldn't do it without her this week.
Karen
Friday, August 26, 2005 11:38 AM CDT
Day +39 Morning
Yesterday Phoebe visited Clare. It wasn't a long visit. But Phoebe did see Clare's room, her nurses, her machines, and Clare.
Right after morning rounds I went back into Clare's room to warn the nurses that Phoebe would be visiting. Out of nowhere Clare's nurse produced a new big red blanket and a stack of little flannel baby blankets. The red blanket covered Clare and the flannel blankets covered all the lines, tubes and wires attached to Clare. By the time she was done, nothing except of the ET tube in sight.
Our child life specialist met me at the PlCU, Karen came down with Phoebe and we all went in. She stood at the door for a minute or so, looking at all the machines, and all the grownups looking at her and then she came around the bed to say hi. Clare opened her eyes and we all held hands. We asked Clare a few yes and no questions. Phoebe asked us why Clare's eyes kept rolling back in her head. That's about it.
While she is on ECMO Clare is in the PICU's procedure room. Outside the procedure room is a bulletin board filled with pictures of patients who have been in the PICU. As we were leaving Phoebe looked at the board for a minute said, "There's my pen pal! I met her at camp!" and pointed to a picture of one of her cabinmates from Camp Friendship.
Kids come into the PICU, they're treated, they come back out again, they go to camp. Phoebe knows. She saw a picture.
Benno
Thursday, August 25, 2005 10:44 AM CDT
Day +38 Morning
Yesterday. More lung rest, more waiting, more patience.
With one small exception. Clare has a loose tooth and it's about to come out. She had to wait until she was heparin-ized, didn't she?
More soon.
Benno
Wednesday, August 24, 2005 10:55 AM CDT
Day +37 Morning
Clare had a restful night. She woke up only a couple of times because she was itchy. It's all the morphine.
One of the times Clare woke up enough that her nurse wanted to give her a bath and lotion her. The layer of gray skin that came after the radiation is peeling off, revealing the new fresh pink skin underneath, and a bath is a good way to keep up with it. The nurse carefully wipes Clare down with a warm, wet cloth. I hold her hand.
Although she is on ECMO, Clare is also on a convental vent to keep her lungs from getting stiff. So communication is limited again to nodding, pointing, shrugging, and hand squeezing.
As we started the bath the nurse reminded me that I had something to tell Clare. I had mentioned it to her when I came in, afraid l was going to forget. So I leaned towards Clare's ear and said, "Clare, we found out who your teacher is this year. You're in Ms. Gugerty's class." And suddenly Clare was squeezing my hand as hard as she could.
Past the machines, underneath the tubes and wires, through the morphine and the Versed, our girl is there. She is still there.
Some of her early test results have come back, and they're negative, which hopefully will help focus her treatment. Today she'll have another day of rest.
Benno
Tuesday, August 23, 2005 8:33 PM CDT
Day +36 Evening
Clare’s lungs are resting. Shhh.
With all the machines Clare is surrounded by – intimidating, seemingly horrible machines – it’s important to remind yourself why she is living with all these machines. Her lungs need to rest.
As of this evening the plan for Clare is to have her lungs rest for several days. In the meantime the samples from her bronchoscopy are being cultured, and the results will come back over the next few days as the cultures grow. Plans can change, but as of right now, that’s the plan.
So take a deep breath, relax and wait with us. Because that’s that we need to do. That’s what Clare is doing.
And be patient, with us. In the PICU patience takes on a new meaning, everyday.
Benno
Tuesday, August 23, 2005 8:07 AM CDT
Day +36 Morning
Today begins Clare's second full day of ECMO treatment. One nurse watches Clare, the other watches the ECMO machine. We watch the blue blood travel out the cannula in Clare's leg, pass into the machine and return as red blood into the cannula in Clare's other leg.
Clare is stable, and heavily sedated. She had an uneventful night where the only major proceduere was her IJ catheter being pulled out slighly because it was too close to her heart. There were two x-rays to confirm that it was in the right position.
Today Clare will have her bronchoscopy, and an echocardiogram. Some results should be available this evening. The others will start to come in tomorrow.
Benno
Monday, August 22, 2005 8:08 AM CDT
Day +35 Morning
A rapid series of decisions about Clare's treatment were made yesterday after her CT scan revealed that her lungs continue to suffer from the same undefined pneumonia that brought her to the PICU. Because her lungs are not improving and are unable to oxygenate her blood, she's been put on a machine that will do this work for her, and ECMO.
After a brief surgical procedure last evening to insert large catheters in her groin, Clare's blood began to be cycled through the machine. This is a carefully monitored process with nurse for Clare and a nurse for the ECMO.
What being on ECMO will do for Clare is relieve her lungs from the physical trauma of being vented, and from the toxicity of the pure oxygen they were bring vented with. While she is on ECMO, Clare's lungs will also be treated with the same broad spectrum of drugs that she was first given as they arrived at the PICU.
Being on ECMO brings a number of risks with it, but at this point what Clare's lungs need is time and that is what ECMO will buy for them.
Benno
Sunday, August 21, 2005 7:00 AM CDT
Day +34 Morning
12:30AM
Clare is fussy. She has a big belly and it’s uncomfortable. She’s been having trouble catching her breath too, so even though she’s clean and resting in a clean bed, she’s still fussy.
What should have been a quick change turned into a bath, a bed change and her nightly mouth care. And throw suctioning her ET tube in there too. Even through the haze of her sedation, she knows that I was instrumental in all the disruption. I hold her hand. She scowls. She pulls away.
So as I write this in our notebook, I’m sitting in a chair at the end of her bed, holding her foot. She tolerates this, or maybe pushing me away is too much effort.
From this end of the bed I have an excellent view of her vent, including a screen that, among many other things, displays a graph of each breath. You can watch her inhale (rise up) and exhale (fall back). It’s kind of like watching fireworks. With the good breaths you think, “Ahhhh!” like you do when the fireworks shoot up into the sky and float back down. And with the short breaths, and coughs, you think “Ohhhh.” like you do when you get a dud.
The current settings on Clare’s vent have the oxygen level set at 100%. What small gains she’s made since going on the vent have been lost. The problem with Clare’s lungs right now is that while they vent well, they are not diffusing oxygen to her blood. The team is looking at Clare’s tests for a cause.
Finally, Clare settles into a deep sleep and I hold her hand. She scowls. I keep holding it anyway.
Benno
Saturday, August 20, 2005 8:53 AM CDT
Day +33 Morning
[See Day +23 Morning]
And this time, I mean it!
Benno
Friday, August 19, 2005 8:53 PM CDT
Day +32
Today marks two weeks in the PICU for Clare. We're going to be here a while longer as Clare is still on the ventilator, although weaning has been mentioned as a goal for this weekend. She rested between an echocardiogram, an EKG, and all the other little interruptions that make up the life of the inpatient child. I noticed that she needed her hand held a little more than the last few days, which was fine . . . I needed my hand held as well.
We hope to learn more tomorrow about the state of Clare's lungs as she will make another trip to Radiology for a CT scan to check for "hidden" infection. Benno and i agree that we're ready for a little less mystery and a little more resolving the problem, but as usual, patience is in order.
We've had daily check-ins from the girl's road trip with Aunt Phoebe, Aunt Emily, Cousin Isabel and Phoebe Ruth. Today they saw Niagara Falls! What a summer of firsts it has been for Phoebe--I can't wait to see the many pictures I know Aunt Phoebe must have taken.
Karen
Thursday, August 18, 2005 10:13 PM CDT
Day 31 Evening
Not good news to report as Clare had to be put back on the ventilator around 6:30pm. She had a very busy day of doctors taking out the catheter in her upper leg, changing the catheter in her neck to a different catheter, and then a trip to radiology for placement of a PICC line her right arm. All of this was too much for her non-existent reserves, especially the time she had to be off the BIPAP mask and on just a regular oxygen mask while in transit. Clare's oxygen sats just dropped and stayed down once we were back in the PICU. It was clear to everyone in the room, even me, that the tube had to go back in.
Benno arrived soon after it was placed and she was once again heavily sedated, letting the machine do its work. Clare was stable and resting when I left. They've started up the CVVH (blood dialysis) machine as well to continue taking off excess fluid.
The doctor described it as a step back, but still way ahead of where she was when intubated upon her arrival at the PICU 2 weeks ago.
NOTE TO UNCLE MARK: would love some insight on the PICC line (doesn't have to be in verse form, necessarily!) as I know you've had some experience with that.
Keep praying for us all. The roller coaster of the PICU continues.
Karen
Thursday, August 18, 2005 5:11 PM CDT
Day +31 Morning
Dear Phoebe,
Here's what I was thinking about last night.
Right now you are away. Again. For the third time in four weeks. I miss you. Even though I've seen you between you trips, we've never had time for anything fun, like going to the pool, just you and me, and then getting a pizza for dinner. I think you've asked if we could do that every time you've been back home.
For me, every time you've been back home has been like getting a present, but then before I have a chance to open it, you go away again. Having you home for good is going to be like Christmas.
I know that when we talk on the phone your first question is always, "How is Clare?" so I'll start with that. Since you've left on your trip things have slowed down a little in the PICU. After they took out Clare's breathing tube she still had a lot of trouble breathing and getting oxygen into her body.
To help her, the PICU team put her on another kind of breathing machine (This is the fourth one, can you believe it?) called a BiPAP. This machine pushes air through a hose and into a mask that covers Clare's nose. So every time Clare takes a breath, the machine pushes air into Clare's nose, and every time Clare breaths out it let's her exhale.
Clare has been sleeping a lot since she got the mask. Everyone says it's really uncomfortable. Maybe she's sleeping so much so she doesn't have to think about it. I wish I could talk to someone who has had to wear one. Don't you? With all of these machines, it can be really hard to imagine what it's *really* like to be on one.
The biggest problem Clare has right now is that she doesn't have any bounce. Some people call this her "reserves", but I like "bounce" better, because it's like the expression "bounce back". Right now, when Clare does anything - kicking off the blanket, or talking for a couple of minutes - she looses all the extra oxygen in her blood. It gets used up and it takes time for her to get more back in there. She doesn't bounce back.
What Clare's body needs right now is time to heal, which is probably the hardest thing for us to give, because we have to be so patient. The more energy it can use for healing, the better it is for Clare, so having machines like the BiPAP to help her lungs, and the CVVH to help her kidneys means that Clare's body can use its energy to heal.
Remember this is all kind of a big trick. Clare's body doesn't know it's being helped by machines, all it knows is that her lungs and kidneys don't need as much energy as healing does. And also remember that it's your bone marrow that give Clare's body the ability to heal. There is no machine for that.
So that's Clare.
The next thing that happens when we talk on the phone - after you ask about Clare - is that I ask you how you are doing. Here's my guess. Tell me how close I am.
I'll guess that you're having a pretty good time with Aunt Phoebe, Aunt Emily, and Isabel. Girl's road trip. And I'm glad. You've had to put up with a too may bad surprises since Clare relapsed. You should have a lot of trips like this.
But let me know if something doesn't seem right. You called everyday from Camp Friendship to check in on Clare. So I'm thinking that it must be hard to have really great things happen at the same time that really bad things are happening. What do you think?
I'll also guess that you might be feeling home sick. I am too. Isn't that funny? I'm homesick for the four of us to be together again. And I always get a little homesick when I'm away from Cabin John. How about you?
I just counted the days since you last got to see Clare and I get 31. One month. Is that right? Did you ever imagine that you would go so long without seeing her? I'll ask her the same question when she's out of the PICU and isn't sleeping all the time. Mom and I thought we'd be talking about coming home by now, instead we're talking about getting Clare back to the Bone Marrow Unit on the fourth floor. Clare is going to be angry as a hornet when she wakes up.
Like everything else about cancer, or any illness, I guess, it doesn't seem to be about what we expect to happen, it's about what actually happens. Something I've learned from other families that have had to live with cancer is that you can think of this as a journey. And you know what? That's really hard. Because it's a journey where you don't know where you're going until you get there. ('Hey farmer! Where *does* this road go?") You think your sister's coming home and she ends up in the PICU.
So right now it may seem like we're a long way from where we want to be, a long way from normal. But I think we'll find normal along the way. And as long as we stick together I don't think we'll get lost while we're getting there.
And now, finally, I'm at the story I wanted to tell you in the first place.
With all the medications, and all the sleeping that she's been doing, I don't really know what Clare's been thinking about. But in the middle of the night she keeps having this dream where she wakes up, looks right at me and shouts, "Dad! We have to find Phoebe!" I don't really know what she's thinking about, but I do know she's thinking about you.
So this is one of the stories that I've been telling about our journey with cancer. What stories do you tell? See you when you get home. I love you.
Dad
Wednesday, August 17, 2005 10:01 PM CDT
Day +30 Evening
Clare's typical day in the PICU: breathe, sleep, grimace at the occupational and physical therapists, occasionally nod to yes or no questions, hold hands with parent, push parent's hand away. All day.
Mom's typical day in the PICU: alternate between staring at child and staring at monitor. Obsessively do crossword. Stare at child sleeping, stare at machines, drink coffee from thermos. Knit on scarf that has no end. Hold child's hand until you're both sweaty. Feel rejected when child pushes hand away. Read magazines, realize you haven't finished a single article. Pray. Read Jane Austen. Stare at child. All day.
We had a whole lot of nothing going on today. The chest x-ray wasn't as good as yesterday, but Clare's oxygen levels continue to be good. She has a long way to go, so we're trying to learn patience.
I have so many thank yous, it boggles the mind, but I'm too tired to do it now. So everyone who has prayed, written, sent gifts, made fabulous meals--thank you so much.
A particular thank you to these two anonymous people: the person who turned in my purse from where I left it in the cafeteria without taking the cash, the credit card, the driver's license or the cell phone; and to the anonymous donor from St. Patrick's who gave us the lobby coffee stand gift cards. We thank you very, very much.
Thanks for sticking with us. This is officially the long haul now.
Karen
Wednesday, August 17, 2005 6:40 AM CDT
Day +30
Yesterday morning Clare had the best chest x-ray she’s had since coming to the PICU. Here’s hoping today’s is as good. Although I’m here for the morning x-ray, I’m off when the results come back, so I’m always a shift behind. But with the help of the BiPAP and the CVVH it seems that Clare’s body has been able to work on the most important thing: healing itself.
The plan for today is to reduce the amount of fluid the CVVH is taking off, give Clare a dose of Lasix and then see if her kidneys, with a push from the Lasix, can pee out the difference.
Once Clare is off the CVVH, the team will turn its attention to weaning her off the BiPAP, by reducing the oxygen and pressure behind her breaths. None of this can be hurried; it all depends on how Clare’s body reacts to each change. Baby steps, figuratively.
Clare has also been “helping” with occupational therapy, lifting her arms, and with bed changes, rolling left and right. This is a good start because Clare has a lot of PT/OT in front of her to recover from the 2+ weeks she’s been lying in bed.
Already she is suffering from drop foot and has a pair of splints for her feet that she wears on and off during the day. First Clare will get stronger in the bed, then they’ll work on sitting and standing, then walking. Baby steps, literally.
Many people have asked if they could make something and bring it to the PICU team and the answer is yes, sort of. Homemade food is a problem, because there’s no one to keep track of where something came from and how old it is. So your favorite treat from the store is a better idea. So far pizza, bags chips and a basket of fruit have all been big hits.
The easiest way to get things to the PICU is to leave it on our porch and we’ll bring it in. The PICU is actually behind a pair of security doors, to control the number of visitors, so it’s easier for us to bring things in.
Benno
Tuesday, August 16, 2005 5:39 PM CDT
Day +29
Clare's supplemental oxygen needs increased yesterday and she was given a BiPAP machine, that helps augment her breathing. While Clare had been breathing on her own, her oxygen sats had been dropping while her respiration was getting higher. So Clare was working very hard to get a little O2 in her blood. And the team is working hard to avoid reintubating her.
Clare's blood gasses and O2 sats on her new mask and machine were good yesterday and all last night, with the exception of when we turned her for a bath. With the effort of rolling to her right, and then to her left, Clare burned all the oxygen reservers in her body and her monitor went into alarm. Finished with the bath and resting comfortably, she came right back. She just doesn't have any extra yet.
Clare's lungs need time to heal. We will wait for them.
----
Because, with Clare's compromised immune system, we're in an isolation room, it's easy to stay focused on her, and her treatment. But obviously we are just one of many families who are struggling with life in the PICU. And we are rich in support and prayer.
Tonight, if we could ask all of you a favor, please give your prayers for us, and for Clare, to the other families in the PICU and the caregivers who work so relentlessly for their children. There are times where life seems so dark, and it is so easy to get lost in it.
Thanks.
Benno
Monday, August 15, 2005 6:20 AM CDT
Day +28
While she was asleep this morning Clare’s vent – needed elsewhere – was quietly wheeled out of her room. Here’s hoping it doesn’t come back.
Like yesterday, Clare still required a lot of supplemental oxygen to breath last night, and her breaths are quick and shallow. When you ask her to take a deep breath, she’ll tell you that it hurts. So whatever is at the bottom of her lungs – fluid, mucus – needs to be cleared.
Around 4:00 this morning her sats dropped enough that her morning x-ray was ordered early. When it came back the x-ray didn’t show any decline, but like yesterday’s x-ray, it didn’t show any improvement either. Remind me to be patient.
The CVVH circuit finally failed last night. This was a good circuit, as it lasted a couple of days. Looking at her fluid levels and considering her lungs, the team will decide today if they will put Clare on another circuit, or just leave her off.
Finally, Clare’s feed has been changed to a higher calorie, lower volume supplement. This is good, because for everything that’s been put into Clare since her NG tube went back in, not a lot has come out. We’re hoping she’s just waiting until she can use the toilet again, but there may be some constipation as well.
Thanks again to everyone at St. Pat’s for checking in yesterday, it was so nice to see you all in person. You’ll see in the guestbook, that Ellen and I were talking about how to teach Clare to cough up that stuff in her lungs and spit, when Ellen realized what the answer was. Ask your kids how to do it.
So now there’s a thread on spitting in the guestbook. If your children are good at coughing and spitting, now’s the time to take pride in it and ask them how they would teach Clare. It’s just the thing after a long PT session in the violently shaking bed.
Benno
Sunday, August 14, 2005 6:10 AM CDT
Day +27
Yesterday, Clare had an uneventful day after she was taken off the ventilator. She is still receiving a lot of Versed and morphine so while no longer completely unconscious, she isn't exactly awake either. We can rouse her with questions, and she opens her eyes to a new voice in the room or if the nurse messes with the many tubes still trailing from various parts of her body.
Clare's first full sentence, unprompted, after the tube came out: "I want to stand up, and I want to go back to our room." The hem/onc folks on 4 Yellow are going to love that she wants back up to their little world so much.
An hour or so later, Clare opened her eyes and said: "It's okay, I had a nap in the car." That made me laugh out loud, and she looked a little puzzled as she drifted off again. Several minutes later: "Grapes. Grapes. Grapes."
What has been going on in that brain these past 8 days? I'm not sure we'll ever know.
Clare's oxygen levels (the all important blood gases test done every hour right now) were still doing okay when I left last night. The nurse felt that she was losing some of her lung function, probably due to secretions not coming out now that they aren't suctioning clear down to the depths through the tube. So the efforts to make Clare cough hard enough to clear her lungs were to continue through the night. The special bed that has been rolling her gently from side to side to prevent bedsores also has a setting that shakes her hard to make her cough. Not all that successful, so other forms of banging Clare on the chest to loosen her up may be coming up.
We loved all the suggestions for the communication board in the guestbook. I'm going to collect them all (well, possibly not "bacon" as that is a private thing between Clare and her godfather Tom) and post them to the ALL-Kids listserv. I have to say that Kevin Tignor's suggestions of "come here" and "go away" might be the most practical--that boy is a survivor, and spent three weeks on a ventilator last year.
We're hoping to leave the PICU in the next day or two, but as many people have told me (including Lisa Tignor whose journal is like a textbook for me), there are no promises in the PICU.
Karen
Saturday, August 13, 2005 1:39 PM CDT
Day +26 Morning
Things went quickly this morning after Clare was given an extubate test at 6:00 AM. For more than an hour we watched her sats as her vent was set only to compensate for Clare's ET tube, or to put it another way, to compensate for the fact that Clare has to breath through a straw. Like she's been doing all week. At the end of the test Clare's blood gasses all looked good, and the decision to extubate her was presented at 8:00 AM rounds.
This takes a little while in the PICU, because the unit is divided into halves, blue and green, but cardiac patients are rounded first, so the team goes from green to blue and then back to green to finish all the remaining patients. Depending on the number of patients and the type of cases, rounds can take up to three hours, and parents cannot be in the PICU during rounds. So things can get a little tense in the waiting room before the visitors are allowed in.
Around 11:00 AM the decision to remove her tube came back, and we waited while the team worked up what kind of supplemental oxygen she would need. Once that was in place Clare's tube was pulled. How? Once you remove the tape that is holding the tube, you count 1-2-3, say "big cough" and pull.
With the nasal cannula for her supplemental oxygen attached, Clare took some big breaths, and by the time I was leaving had settled into a regular rhythm which was producing good sats.
What happens next? Clare is on a 24-hour watch in the PICU. Our day nurse warned us that some kids have a great first 12 hours and then they poop out and have to have their tube reinserted. We'll see how she does.
That list of things we should never take for granted? Unassisted breathing is now at the top of mine.
Benno
Friday, August 12, 2005 7:43 AM CDT
Day +25 Morning
The CVVH had a new circuit last night and it was having trouble coming out of it's self test mode. The final decision was to take Clare off the circuit and take the CVVH offline until this morning when the circuit can be rebuilt. Clare I's and O's are pretty even when the machine went down, so they can restart this morning with little impact on her.
Of course this all happened in the middle of her bath, and while there was a problem with the positioning for her ET tube, so I stood back and watched the PICU nurse deftly juggled troubleshooting the CVVH, double checking the position and length of the ET tube, and finish Clare's bath. It would have taken me three days to finish what happened in just three hours last night.
Clare's "eating" continues to improve. Her feed is set to 30cc an hour and as of last night, it seems to be moving through her as hoped. This is the first food she's digested since they pulled the feeding tube since July 25th.
So, Clare slept though most of what turned out to be a pretty routine night. And when she was awake, we made good use of the communication board that Karen created for her yesterday.
Right now the board has the following choices that Clare can use to tell us what she needs: Pain, Itchy, Bathroom, Blanket, TV, Music, Throw-up and Sleep. Today's question for the guestbook is, "If you were Clare, what would you add to the communication board?"
Benno
Thursday, August 11, 2005 9:39 PM CDT
Day +24 Evening
Wow, my husband is one eloquent man, so if you haven't read the update from this morning, I highly recommend that you do so right now.
Today was not a huge step forward, as there was no further weaning off the ventilator. Clare's oxygen levels weren't great, so they upped the oxygen a bit, and will try to continue weaning tomorrow. It wasn't a huge step back either, so we take comfort in the doctor's caution with our daughter's lungs.
We hope that the tube will come out this weekend. No one promises anything in the PICU.
Clare remains sedated, but was awake enough to be petulant with the OT and PT people who were trying some stretches and strength moves with her. She can be pretty expressive even though the tube prevents her from speaking, mostly through pushing their hands away, and pointing to the word "sleep" on her communication board. The scowl is very effective as well.
Benno picks Phoebe up from camp tomorrow, and Aunt Phoebe arrives from Colorado to begin the girls road trip with Aunt Emily and Cousin Isabel.
Thanks for reading these late night ramblings.
NOTE TO CABIN JOHN LOCALS: why yes, that was an ambulance parked in front of our house with lights flashing at 10pm tonight, but only because they overshot the house next door. It didn't look serious, but more of the same. If you're praying for us, you might add them to the list.
Karen
Thursday, August 11, 2005 6:53 AM CDT
Day +24
Morning
Dear Miss Clare,
One month ago, at 5:30 this evening, you checked into Bone Marrow Transplant Unit in the Hematology/Oncology department on the fourth floor of the Children's National Medical Center. Seven days ago you got really sick, and had trouble breathing, so you were brought to the PICU on the third floor.
You’ve been asleep the entire time you’ve been in the PICU, except for the times we woke you up and asked you how you were feeling. You probably won’t remember these times because along with morphine for you pain, you’ve been getting Versed like you do before a spinal tap. That’s the med that makes you forget.
So I thought I would tell you what’s happened to you this past week.
You have a lot of pumps now. Way more than the six you were trying for upstairs. As of this morning you have three poles. One of them has two blue pumps on it, which are really two pumps each. So that’s four. The other has two new blue pumps (That sounds like Fox in Socks, doesn’t it?) and they are really four pumps each, so that’s eight more. Then there are two spring pumps, and one pump for your feeding tube, so if you add them all up there are fifteen pumps attached to you.
You have a lot of lines and tubes now too. There’s a new NG tube (the first one you had in the PICU was taken out and replaced with the new one), like the one you had upstairs, to help you eat. There’s an ET tube in your throat to help you breath. And you have a Foley tube to help you pee. You have a new central line in your neck, and it’s a triple lumen, so altogether you now have five lumens. There is a peripheral line in your right foot for meds. And an arterial line in your left hand to test your blood. You also have a line at the top of your right leg that splits in two, to help your kidneys. So if you count up all the lines and tubes, including your first central line, you have eleven lines going in and out of you.
The lines that help your kidneys leads to a kidney machine (which everyone calls the CVVH). The CVVH takes blood out of your body, cleans it and removes a little extra fluid, then returns the blood to your body. You have also had two breathing machines in the PICU (which everyone calls vents). The first vent – also called an oscillator - gave you a lot of little breaths really fast, so it kept your lungs filled with air like a big fan keeps a moonbounce filled with air. Your second vent gave you breaths more like regular breathing and you didn’t get puffed up. So that’s three machines.
You also have a special bed that slowly goes up and down and back and forth like a boat in the water in slow motion. This keeps your muscles from getting stiff and your skin from getting sore. And you have a blanket that is filled with hot air and floats above your bed. Your first blanket was underneath you and it got cold whenever you had a fever.
You have three or four times as many charts too, where all the measurements of your blood and breathing go. The PICU measures them all the time and writes everything down. Your blood and breathing are so much better that you may have your breathing tube taken out tomorrow.
And while I can count a lot of things that you have from this week in the PICU, I can’t count all the people who have helped you since you got there. And you’re not going to remember any of them.
So think about all the people that you know on the fourth floor. All the doctors and nurses, all the people who take your vitals, the people who keep your room clean, the people who bring your meals, the people who help you with physical therapy, and the clowns. Okay? Now double them, because now there’s another floor of people who are helping you to get better.
Love,
Dad
Wednesday, August 10, 2005 8:53 PM CDT
Day +23 Evening
Clare had a really good day today, and continues to make progress toward getting off the ventilator. We keep getting warned about two steps forward, one step back, but so far so good. Her oxygen levels are good, and in all her doctors (both oncologist and PICU) pronounced themselves pleased with her today.
She continues to respond by nodding to yes/no questions, and is moving around in the bed somewhat, trying to get comfortable. Physical therapy and occupational therapy people were in today for some stretches, and to check on her strength.
Many, many thanks to all of you supporting us in this difficult time. I'm way too tired to start a list, but a particularly stellar basket of goodies came from Benno's work today, and was much appreciated.
Finally, which of my brilliant friends sent the grilled stickies from the Diner? (For the non-Penn Staters: heavenly grilled sticky bun from iconic restaurant in State College, Pennsylvania) No signed card! Thank you, thank you, thank you--they are awesome.
Karen
Wednesday, August 10, 2005 7:38 AM CDT
Day +23
Morning
Last night was quiet. Clare rested while her body continues to heal. A night of little things. Her bed was changed. Her dressings were changed and dated (They’re very precise in the PICU.) She was weighed. Samples were taken for Wednesday cultures.
As Karen mentioned yesterday, Clare’s sedation has hit the sweet spot. If you raise your voice you can wake her up and she will answer yes or no questions by, sometimes vigorously, nodding or shaking her head – once you remind her that she has a tube down her throat and can’t talk. Then she goes back to sleep.
Clare, does your throat hurt? Yes.
Does your stomach hurt? Yes.
Do you need more morphine? Yes.
Can you open you mouth for suctioning? No!
There is a lot of white noise in Clare’s room. The click-click-click-click-click is the CVVH machine (the Gambro Renal Products Prisma System) removing Clare’s blood, filtering it and returning it to Clare’s body minus a small amount of fluid every hour. It’s a nice sound, like a model train running down the tracks. The warming/cooling blanket? Not so nice, as it’s connected to what might as well be an air conditioning unit standing on end. The vent makes a great sound. Quiet breathing with a release at the end. Like a little scuba diver is sitting at the back of the room.
Clare’s room has a view of the new wing of the hospital. The new wing is still under construction and at night it’s lit up with lots of bare light bulbs strung together. The empty, dusty, primitive floors contrast with the HEPA filtered isolation room filled with computerized pumps and monitors that Clare rests in.
Listening to the morning report, just before I had to leave the room. Here’s what we know about Clare. Her vent settings are about to be reduced again, as she is further weaned. Every time she is weaned her stats are stable and her blood gases are good. Her sedation is in the aforementioned sweet spot. As of this morning Clare is almost four pounds lighter than when she was first weighed two days ago. More than 2.5 liters of fluid have been removed from Clare since she was put on the CVVH.
One of the many great things about the PICU team is that as they stand over the reams of data (I’m not kidding.) that they’ve collected on Clare, they immediately translate all of the numbers into what Clare is telling us. This probably comes from working with kids who are having the ET tube, large dose of pain meds combo meal. They’re not talking so well, but their numbers are. Looking up at Clare from the little table filled with data, they said, “Clare, are you telling us that you want to get out of here?”
There is still a way for Clare to go, but we are glad to hear her in translation.
Benno
Tuesday, August 9, 2005 9:49 PM CDT
Day +22 Evening Update
Phoebe called from her camp again today. She's still pretty freaked out that Clare has been asleep since last Friday, but is having a good and distracting time at Camp Friendship. She rode a horse for the first time, and was off to try her hand at archery. I'm so glad camp was this week, and that she is having fun.
More little steps in the PICU today in that two of the 6 antibiotics Clare has been taking via IV have been dropped as per the preliminary results of the broncoscopy yesterday. We hope that when we meet with Dr. K tomorrow he will have even more information from that test.
Clare's daily chest x-ray is still serious, but not worse. Tomorrow is another dose of Enbrel, the drug that is supposed to limit damage to the lungs from this idiopathic pneumonia syndrome believed to be the culprit by our docs.
Bottom line: still very sick, but small steps forward.
A big thing for me was that Clare reacted to my voice and blinked her eyes open briefly when I first walked into the room this morning. She also nodded to some yes/no questions. Now this child is on a truckload of a drug called Versed, so she won't remember any of this time, and in fact, probably doesn't remember me talking to her 30 minutes later. But, a child needs to hear her parent's voice even if she doesn't remember, so I've been chatting away. It is a little strange to have a one-sided conversation with someone who is pretty much completely unconscious most of the time. But, I've been talking to myself (and to the cat) for years, so I'm pretty good at it.
Karen
Tuesday, August 9, 2005 11:12 AM CDT
Day +22
Morning Update
Clare had a quiet night last night punctuated by a bath and a bed change. She is off the paralyzing drugs now that she's off the oscillator. Her sedation was good with a baseline that was light enough for her to respond to stimulation (being rolled during the bath) but, with a bolus, heavy enough to tolerate a suctioning, (more on that later). She likes to hear people talking, but doesn't like to be read to.
The CVVH machine had some mechanical trouble with the circuit, the pressures kept going bad, so she's behind in her fluid removal. The machine will be adjusted to catch up today. Clare will also be weaned a little on the vent, and because she had good bowel sounds last night, a feeding tube will be started, with a very small feed, to get her GI system up and running again.
In the PICU a lot of things are turned upside-down. Bad becomes good. This takes some getting used to. For example, when Clare has her tube suctioned it's really unpleasant for her, but a lot of good can be found in it. Here's how suctioning works, but it's important to remember that this all happens *very* fast. Read quickly. See if you can find the good in the bad.
The nurse preps a syringe of saline and a thin suction tube. A second nurse gets ready to bag Clare. Clare is taken off the vent. A couple of breaths are bagged. The ET tube is rinsed with saline. Clare coughs (Good: Clare's cough reflex is intact).
The thin suction tube is dropped down the ET tube to suction out the saline. This is so unpleasant that Clare bites the ET tube preventing the suction tube from advancing (Good: Clare is willful and able to fight).
Clare's chin is held down to prevent the biting, and the tube is suctioned out. A couple more breaths are bagged. The suction process is repeated. This time, after her chin is held down, Clare reaches up with her hands trying to remove the tube (Good: her arms still have some strength in them).
Finally Clare's mouth is suctioned to remove the mucus that builds up in her mouth above the inflated cuff that holds the ET tube in place. Clare gags as the back of her throat is cleaned out (Good: Clare's gag reflex is intact).
The vent is reattached, and Clare, sedated from the bolus (I'm pretty sure "bolus" is latin for big-syringe-filled-with-lots-of-morphine-or-Versed), and exhausted from her effort, falls asleep as if it never happened. Which is the point of the Versed, a trade name for Midazolam which is used as an amnesia and sedative.
How did you do? Okay, thinking like this takes a *lot* of getting used to. Or a crash course in the PICU. But "bad is good" is not as Orwelliean as it sounds. Remember that the goal here is not to lose ground, and rest so that you can heal. Imagine that this procedure had happened and Clare had none of these normal, healthy reactions.
That would be bad.
Benno
Tuesday, August 9, 2005 6:06 AM CDT
Day +22
Yesterday's update by Benno is still the best explanation of Clare's status, so if you haven't read it, click "journal history" at the top of the page.
Yesterday, Clare had a broncoscopy, a test that allows docs to look at the inside of her lungs, and bring out a sample of the secretions deep in the lung. This was a fairly abbreviated test on Clare as she is not strong enough to withstand a very invasive test, but doctors in the PICU and our transplant doctor were very sure this test was needed to really figure out Clare's problem.
Once the sample has been cultured for 24 hours, they will be able to definitively rule out various bacteria as the cause of infection, then treat accordingly. Our doctor is fairly sure that the cause is idiopathic pneumonia syndrome (IPS) which is a rare occurrence in some post-BMT patients.
Benno will update more this afternoon. We're still trading 12 hour shifts, which doesn't allow much time for anything other than sleep once you get home from the hospital.
Thanks to all for your help and prayers.
Karen
Monday, August 8, 2005 4:28 PM CDT
Day +21
Stop chasing the tail.
Clare is retaining a lot of fluid. By measuring her ins and outs ("I"s and "O"s) the PICU team knows that she's retaining about 3 liters of the fluids that she's taken in since she came to the unit. So many of her antibiotics and meds must be given with fluid that at least half of the bags on her pole are water. And fluid retention is a critical factor in treating her pneumonia.
Early yesterday morning, the team was trying to address the fluid retention by giving her large doses of diuretics. And this made her pee a lot, looking at the output in her urine bag (she was catheterized the second night in the PICU). But this was followed, unfortunately, by a significant drop in her blood pressure.
Instead of moving the fluid out of her tissues, into her blood and then out in her urine, the diuretics were working so quickly that her body was expelling only the fluid in her blood. How do you resolve this problem? Give the patient more fluids. Or as someone the team put it yesterday morning, "The problem is we're chasing the tail." and they wanted to get in front of the problem.
Meeting with the transplant team later that morning, we were offered a solution, consulted with a specialist, and spent the last part of the meeting getting educated and signing consent forms.
Late yesterday morning, Clare was placed on a continuous veno-venous hemofiltration (CVVH) machine, which filters her blood and slowly removes the excess fluid from her body, by taking off more fluid than it returns. Clare was given a catheter with a Y shaped connector at the end. The CVVH draws blood out from one line, filters it, and returns it on the other.
While the CVVH could perform dialysis, at this point her kidneys, as well as her liver and heart, are all functioning correctly. But along with removing fluid, the CVVH will assist her kidneys and protect them from being overwhelmed. Since the catheter was inserted in her groin and the CVVH circuit (the tubes and cylindrically filter that the machine pumps her blood through) was brought online yesterday, a liter of fluid has been removed. Getting in front of the problem.
Yesterday afternoon, however, saw little change in Clare's breathing, and Karen had one of those sobering, informative and important discussions with the PICU doctor. In the PICU the balance between pragmatism and optimism becomes a razor's edge. Too much of one or the other doesn't help, and to strike the balance you have to know what you don't want to know.
Clare could not stay on the oscillating ventilator indefinitely. It was critical that she come off of it in the next few days. And as the day progressed, Clare's blood gases stared to show too much CO2 in her blood. The team actually had to hand bag her earlier in the day to "blow off" the CO2 in her lungs. So the benefits of the oscillating ventilator were rapidly decreasing.
With the oscillating ventilator loosing its effectiveness, the team decided to move her to a standard vent and - close readers of the guestbook know what happened next - Clare successfully made the transition to the standard vent. Her blood gases were good, her chest sounded right, and she tolerated the first, small weaning change in the settings. Looking up from the ever growing pile of charts, notes and numbers that are filling the little desk in Clare's room, her nurse wrote down the latest blood gas results and said, "Hey, Clare's telling us she's ready to do some of her own breathing! Good job Clare!"
So in this morning's meeting with Clare's transplant doctor we reviewed these small improvements. Small, because Clare still needs a few days to have all the excess fluid drawn off, her chest films are no longer showing rapid change for the better, but only modest changes, and the settings on her vent are still to high to consider weaning her off.
And Phoebe. Phoebe who should have a page of her own. With journal entries all about her. Phoebe is at Camp Friendship this week with a big group of kids and counselors including Christopher and Samantha Melkonian, a camp for cancer survivors and their siblings. A place where she is surrounded by people who get it. People who have lived through it like she is living through it. Of all the places she could be this week, this is probably the best.
We've been telling her, "Here is a place where you can really talk to people. These are people who will really understand." And in her understated way she says, "Yeah, I know." The understated way that all kids have, that makes all parents say, "What's really going on in there?" It's nice to know she's at a place where all the attention is on her. But even when it's supposed to be about her, she's thinking about Clare. The phone call I got checking in on Clare this afternoon? It was from Phoebe.
I think most of the time Phoebe will tell you things are fine, and she's pretty good at making you believe her. It takes time to get more out of her than that, and we've had little to give her in recent days. But sometimes her guard drops and something gets by that shows you the weight she is carrying. At nine years old. When Clare went to the PICU, I had to tell Phoebe, "This is the sickest Clare has ever been." And Phoebe's first question was, "Is there something wrong with my marrow?"
Benno
---
If you were to put the line in Clare's arm, instead of her groin, the CVVH process would look a lot like how you donate platelets. Blood goes out, is processed by a machine, and is put back into your body. (202) 884-5437.
Sunday, August 7, 2005 7:39 AM CDT
Day +20
Yesterday was more of the same for Clare in the intensive care unit, but no more fevers which is very good news. As Benno wrote yesterday, she is completely sedated, and doesn't move. We do talk to her, and try to keep a hand on her head, shoulders, or hand most of the time while we are there.
We are encouraged by her blood work, and hope to hear more good news today about the condition of her lungs. The doctors continue to try to identify exactly what pnuemonia or other infection may be causing this distress. None of the blood cultures drawn yet show any infection, so treatment with steriods also continues.
Many, many thanks to Clare's Crew for the incredibly thorough cleaning of our house. I imagine many of you smell faintly of Lysol even now, and we appreciate it more than you can know.
I also have to mention that not only did Betty McWhorter help clean my house, she then came to the hospital to pray with us. Now that is full service clergy!
Tom and Kathleen Black are running the show between organizing the cleaning and keeping Phoebe while Benno and I trade off in 12 hour shifts here. Phoebe leaves for Camp Friendship today for 5 days of sleep away camp for kids with cancer and their siblings. It couldn't be more well timed, as I think Phoebe is feeling the strain of this setback as much as we are, and will have the support of fellow campers and counselors that have been through this as well.
Thanks so much for the support and the prayers. We are depending on them.
Karen
Saturday, August 6, 2005 10:55 AM CDT
Day +19
"Things are looking better today, but we're going to have to take this one day at a time." This is what Clare's doctor told us and after spending a night in the PICU, we would have to agree.
After a low point in the intensive care unit (PICU) where she spiked a 107 degree fever, Clare has made some modest improvements over the course of the last 24 hours, and her latest chest film shows less white (fluid) and more black (air) in her lungs than yesterday. The first chest film they took yesterday was a "white out", so this morning's film is a noticeable improvement. Her counts are good, and her cultures remain negative.
Clare has been put on a special ventilator - an oscillating ventilator - to assist her breathing. As an airway tube is an invasive and uncomfortable procedure, Clare has been completely sedated and will sleep through the entire time she is on a ventilator. The sedation is especially welcome because the doctors have also paralyzed Clare to prevent her from fighting the unnaturally high, short breaths that the machine uses to keep her oxygen levels at 100%.
Our days in the PICU will be focused on specific milestones related to Clare's breathing, reduce the fluid in her lungs, wean her off the oscillating ventilator and onto a standard ventilator, wean her off the ventilator and have her breath on her own.
While Clare is in the PICU, Karen and I will follow a different schedule, she'll be with Clare during the day, I'll be with her at night. This also puts us in sync with docotr's rounds and her daily assessment. The care we have had at Children's has been exemplary, so it's difficult for us to describe the care Clare is getting in the PICU. How can something be better than the best? But thre it is is.
Things are faster, more efficient, and every detail that will indicate the direction of Clare's health is being closely monitored. Yesterday we had a consultation with an out of town colleague of Clare's doctor, who specializes in the the exact kind of respiratory distress that Clare is struggling with.
With this kind of care, and the endless support you all are giving us, we are determined to see Clare through this difficult stretch of her journey.
Benno
Friday, August 5, 2005 4:58 AM CDT
Day +18
Early this morning Clare had trouble breathing and was diagnosed with pneumonia. She was quickly moved to the ICU, where she was put on a ventilator. Your honest, determined prayers have been with us since the beginning. Please pray for Clare and for her continuing health today.
Benno
Thursday, August 4, 2005 10:44 PM CDT
Day +17
Got run down by an avalanche.
Clare ran hot most of today, moving from a low-grade to a high fever and back again. And back again. This may be related to the fluid her body is retaining, as her weight has been consistently one or two kilos too high for the past few days. This morning, after carefully poking at Clare's big belly, the team decided to give her a CAT scan and see what's going on in there.
Not much went right today. Lights were too bright. All the shows were reruns. Music didn't sound good. Everyone kept waking her up out of a sound sleep - including me, when it was time for her shower, but in the meantime I had convinced myself that the field trip to the CAT scan machine would come while she was in the shower. Or trying to talk to her during a favorite show.
The thing about a CAT scan is that it's one thing to order the scan, it's another thing to have it actually happen. Think Seinfeld at the rental car counter. Hats off to Dr. S. (we worry that Dr. S. never goes home) for shepherding Clare's order through the not surprising bureaucracy (it is a big hospital, after all) to make sure that it happened today. As I was leaving, they told Clare she would be going down tonight. Karen and Clare got back to the room at 11:00 pm. Karen tells me that Clare held still and was good.
Don’t worry, she’s a game girl you know.
There's another downside to a CAT scan and it's when you have to drink contrast fluid, so the image can clearly delineate your insides. Since Clare's scan was focused on her belly, she needed to drink 16oz of contrast fluid. Considering that she hasn't eaten since the feeding tube was pulled, there was no way this was going to happen.
First of all, it doesn't taste good. And the easiest flavor to get is the most hated fruit punch. But one of our wonderful nurses took this all in and delivered the apple flavor with a promise of lemonade flavor if it didn't taste good. Clare had a sip and a minute later I was in the hall asking for the lemonade.
The second thing is that you only have an hour to drink all the fluid, which would have been three of the plastic cups that came with the bottle. Clare got started with some small sips and as the hour wore on we kept reducing the goal. You need to drink all three cups. Ok, let's try for one and a half. How about shooting for one? Well, at the 50 minute mark Clare had managed to drink half a cup, and then it all came back up.
Fortunately, this was all taking place during the shift change, so everyone was still around, and, after taking a look at Clare, our nurse returned from the meeting and reported that there would be no more contrast to drink. Instead, they would take a scan of her chest, injecting the contrast into her central line, and take a scan of her belly, just to see what they could see.
So, like other procedures we've had, this will be about finding out what it's not. Which means we may be returning to one of the first lessons that we learned when Clare got to the unit. The unexplained fever. Once we know the things that it's not, the only explanation for the fever is that there is no explanation for the fever. And the ever widening spectrum of antibiotics is widened.
This kid's got guts.
Benno
---
Dexter: Have you heard about dear Blanche? Got run down by an avalanche.
Mike: No!
Dexter: Don’t worry, she’s a game girl you know. Got up and finished fourth.
Mike: This kid’s got guts.
Dexter: Having a nice time? Grab a lime.
Wednesday, August 3, 2005 6:50 PM CDT
Day +16
Magic number: ANC 1123. White blood cells: 1.56. Everyone is very pleased with these numbers, especially Dr. K. who had told Clare he would shave his head if she didn't feel better by today. She wanted to hold him to that as she had spiked a fever by the time he did rounds, and really didn't feel very good. But she grudgingly agreed that her mouth didn't hurt too much and her throat was better. So, no clippers in use at this time.
Our nurse, in the room at the time, voted for the head shave, as did the nurse practitioner making rounds with him. Clare had told one of our favorite docs when she was visiting yesterday about this agreement, and she had made us promise to have her paged if any head shaving was going to take place. I think Dr. K. felt a little ganged up on by the end of rounds. Probably the last time he makes that kind of bet with Clare--she'll hold you to whatever you promise!
The fact that Clare even makes conversation outside of answering direct questions is a huge leap forward. Now if we could stop these fevers from spiking we'd be even happier.
Last night was rough as once again the oxygen monitor kept sounding the alarm. More nurses and techs (and one worried mom) standing around Clare's bed encouraging her to breathe deeper. I don't know whose nerve broke first, but the oxygen department was called, and now Clare sports a thin little nose contraption that crosses her face like a clear tube mustache.
Well, nothing screams "hospital patient" like an oxygen tube, but honestly, anything to stop that alarm in the middle of the night. The theory is that once the sores in her GI tract heal and she needs less pain medication, her breathing will be less "depressed" and we will be able to drop the tube.
Steps forward, steps back. Pretty much on track here, I'm glad to report.
Phoebe seems to be having a relaxing time at Nana and Grandpa's in Delaware. It sure is too quiet with both kids and the cat gone from the house. When it is my night to be home, I'm always listening for them. I'm so ready for our family to be back under one roof together.
The guestbook has taken on a life of its own, and we love it. Thanks to all who are signing in.
Karen
Tuesday, August 2, 2005 6:13 PM CDT
Day +15
It's shift change right now, and I hear the doctors and nurses talking excitedly at the desk around the corner from our room. You can hear almost everything in the hall because they keep it empty and easy to clean. We've been here a while now, because the voices that I can't put a name to are still familiar. These are the voices that stop by the room, or greet us in the halls, and ask about Clare, and ask about us.
Again I think of college where the elevators were right outside my dorm room and I could hear my friends in the hall waiting to leave, or just returning. Oh there's Matt and Dasha. I hear Laura. Matt and Chris are back from dinner. There goes Rob. Listening to this shift change is like that.
Clare spent last night talking in her sleep, and by talking I mean moaning and and panting. Occasionally she would say something I could respond to, like "What do you think that's a picture of?" and then we would have a brief conversation. But unless you know what you're asking about, none of it makes sense. It's like talking to someone who's been given truth serum.
For the past two nights we've had a new wrinkle, the oxygen level in Clare's blood has been dropping below an acceptable limit, and her WelchAllyn ProPaq CS goes into alarm. Two or three deep breaths makes the alarm go off, but it doesn't do much for sleeping. The transplant team and the pain team are working on a solution. But it doesn't look like it will be here tonight. Karen will need a lot of coffee tomorrow.
In our conversations today we've started to talk about the other milestones Clare will have to meet to come home. She has to stop vomiting. She has to go an extended period without a fever, either a high grade or low grade fever - like the one she has right now. She has to be eating. While her mouth, stomach and throat do seem to be healing, the subject of eating makes her cry, and she has forbidden us from talking about food. She has to be strong enough. She has to take a few more steps.
And she'll come back here too, before she's done. During our short/long time here we've seen other children go home and come back. Talking with the other parents in the unit, and parents who have been through the unit, it's pretty clear that's what we'll be doing. Because that's part of our journey.
That said, we are still marveling at Clare's second step towards home. Like a rocket, her ANC climbed to 421 today. So to recap, in four days her ANC has jumped: 0, 12.1, 72, 421. Grow cells grow indeed. Our day nurse cautioned us, "Now it's going to go down again." and we know that it will. There's too many variables in the equation that's producing her blood cells right now.
During rounds the doctors explained that Clare's red blood cells, and platelets will continue to lag behind the white blood cells. And she will continue to be transfused. As I write this she's being transfused with platelets.
Platelets aren't red, they're a transparent gold color. It's one of the reasons why we all call them liquid gold. This particular platelet bag has a big red sticker on it, "Volunteer Donor". Thank you to whoever donated this bag. Thank you for my daughter's continued health.
Benno
Monday, August 1, 2005 5:48 PM CDT
Day 14
Clare's low grade fever of this morning, has developed into a true fever this evening. The tylenol went down by mouth, with a sip of water which is no small thing these days. It's been over a week since anything was taken by mouth until yesterday's sip of water.
Two weeks have gone by since transplant day zero. I wouldn't say it has flown by, but really, that's a long time in transplant time. As Benno reported yesterday, Clare now has white blood cells, those fabulous little infection fighters. There are several types of white blood cells, such as neutrophils and lymphocytes, among others. The amount of neutrophils present is how you measure the ability to fight infection, hence our obsession with the ANC or absolute neutrophil count.
Clare's ANC today: 72. Whopping better than the zero she's been at for all this time, and impressively better than yesterday's 12.
There have been some questions about what all these blood counts actually mean, so for the truly interested, try this link:
http://www.patientcenters.com/leukemia/news/blood_counts.html
For everyone else, here are some "normal kid counts"
White blood cells (WBC): between 5,000 and 11,000 mm
Hemaglobin (HgB): between 11.5 and 13.5 g/100ml
Platelets (PLTS): between 160,000 and 500,000 mm
WBC are broken down into the following percentages:
Segmented neutrophils (Segs): 50 o 70 f total WBC
Band neutrophils (Bands): 1 o 3 f total WBC
Monocytes (Monos): 2 o 10 f total WBC
There are also a lot of other things in the WBC like the hematocrit, basophils, lymphocytes, etc., but these are the main things about which we obsess. So if the above are normal kid counts, then look at Clare's counts for today:
WBC: 0.18 (180 mm)
HgB: 6.7
Segs: 40
Bands: 0
Monos: 20
PLTS: 17,000
So for those of you still with me here, yes, those are some mighty low counts. We're very pleased, considering that just two short weeks ago we killed off her marrow so that it was not producing ANY of these counts. And yes, that HgB is very low, and Clare is getting a blood transfusion today.
Short explanation: Phoebe's marrow is starting to work, but SLOWLY as expected.
Many of you watched us arrange Clare's schedule per the ANC when she was on treatment for the original diagnosis from November 2001 through January 2004. No school with an ANC below 500, no leaving the house with ANC below 250, everyone washes hands every time you enter the house. We'll be doing that again for sure, and probably with even stricter restrictions. I can only think of once or twice during her first treatment that her ANC ever fell below 100, and it was never zero. Even as we sound like wizened professionals at all this leukemia stuff, transplant is a whole new territory for us.
Phoebe is spending a few days at Nana and Grandpa Schmidt's as our new kitchen floor is going in today, and the upstairs carpeting is being professionally cleaned tomorrow. She has been kind of pushed from pillar to post in the last few weeks, and that's hard. What a great kid, though, she always seems to pull it together when we need her to be really mature.
In picking up the unholy mess, I mean, the kid's room, in preparation for the carpet cleaning, I came across a list that Phoebe had made in May. It is titled Things to do this Summer. Here are a few items:
1. be bone marrow donor
2. go to patrol camp
3. go on short vacation
Bet none of you ever made a list like that when you were nine.
Preparations for Clare's eventual triumphant return to the old homestead are being planned as you have probably heard if you are a local. One of our hardest tasks took place last Friday when we relocated Lynn the cat to her temporary summer home at our good friend Carl's house. Dander and any possible accidental scratches are too dangerous while Clare's immune system is so suppressed, so we had to make other arrangements for the cat. Lynn had to be gone once the air ducts and carpets were cleaned.
Carl assures us that Lynn is making the transition very well. She has already disrupted a dinner party and woken him up at 4:00am demanding attention while exploring his house. The Harrises have been helping immensely with the transition by going over to play as Carl does have to go to work all day, poor guy.
This is such a load off my mind, I can't even tell you. These are the kinds of favors I don't think you can ever really repay.
Karen
Sunday, July 31, 2005 11:01 PM CDT
Day +13
Twelve point one.
ZZZZZ, zzzzzz. ZZZZZ, zzzzzz. ZZZZZ, zzzzzz. Today was like yesterday, except that where Clare lay in her bed, sat up , spat and lay back down over and over yesterday, today she slept.
We were up two or three times in the night - there are two entries in the notebook, then a cryptic mark - I think Clare was up to go to the bathroom some time between 4:00am and 6:00am when my pen working skills are at their lowest. After that she slept until 9:45am which is unusual.
Normally we wake up just before the lights are turned up in the hall. The lights are down from around 9:00pm (nighttime) and then they come up around 8:00am (daytime). So she was up just in time for morning rounds, and vitals. Her temperature was a little high, she's still weighs a kilo too much as she's holding fluid (Third spacing. Ask your friends.). Then she went back to sleep around Noon and didn't wake up until 4:15pm. I read. She slept.
Her treatment was pretty much the same as yesterday too. More Kytril and Ativan during the day. Dilaudid on demand when she was awake. She's still getting a battery of antibiotics. And after she got up and had a quick shower, her TPN was hung.
The only different thing that happened today was that Clare had an ANC. After days of it being zero, Clare's absolute neutrophil count (ANC) was 12.1 this morning. What does this mean? Well, when Clare's ANC is over 500, and she meets several other criteria, she can come home.
When doctor's told us she had an ANC this morning, I asked, "So Clare's bone marrow is starting to do its job?" And the doctor corrected me, "Actually, it's Phoebe's bone marrow that's starting to do its job." I called Phoebe.
We have - Clare has - been waiting 13 days to take this second of many steps. We're all looking forward to the third. Good, good news. Time to give thanks. Time to clean the house.
Benno
Saturday, July 30, 2005 9:28 PM CDT
Day 12
Clare and I had the most silent day at the hospital yet as she still feels lousy. No TV on the whole day, which is a record for her at the hospital. The mucuositis is still really a problem, but we've had another fever-free day. We look for the positive here! The docs think that she is right on track, and continue to tell us that she will feel much better in a few days. They tell us neutrophils have been spotted in the blood work--a very postive sign indeed. No ANC yet, but there is definitely a feeling that we're moving in the right direction.
Clare just scowls at them when they say that. It would be funny if she didn't feel so rotten.
Another round of platelets for Clare today, and more Kytril and Ativan to fight the nausea. Between those, the TPN (nutrition via IV), and the occasional blood products, she has more tubes strung from her bedside pole than you can believe. The nurses are in and out all day tending to the beeping pumps.
Nana and Grandpa Schmidt came today to help with Phoebe, and for general moral support. They all came to the hospital this evening to wave through the door at Clare. She did muster up a wave back at them, but that was about it.
Our friend Rachel stopped by the hospital today with a giant basket of fruit, crackers, cereal bars, and tea bags, among other goodies for the Ronald MacDonald Room. Way to go, Rachel--I saw a crowd around the basket several hours later, and things were going fast. We really appreciate it.
Karen
Friday, July 29, 2005 8:15 PM CDT
Day +11
Clare is learning how to spit - a popular topic of conversation among the parents here on the BMT unit. Instead of trying to swallow all the mucus her mouth is producing, she started to spit it out today, figuring out that this was easier on her throat and stomach than trying to swallow it.
This resulted in a long conversation between Clare and the physical therapist about cowboys and spittoons, but we had a hard time trying to explain why they need to spit so much. Didn't want to get into a conversation about chewing tobacco with a kid who's been queasy for almost two weeks.
Clare's medications continue to be adjusted, and in some cases, reduced. Her current dose of Dilaudid (our computer's dictionary spell checks this as "deluded") may be a little to high. And Clare's Ativan is now on demand, rather than a routine dose.
Of course we don't want Clare to get more than she needs, but it's a little hard to hear only a day after things had finally arrived at the right mix. It's like when you were in college and your friends took you to a party only to leave as soon as they walked in. "But we just got here!"
So another day of routine adjustments here on the BMT Unit for us, but remember, we're in a place where routine is good.
Prayers of thanksgiving please for Karey, Jeff and their son Bruce. Look in the guestbook. They've just found a perfect match in the bone marrow registry and will be fellow travelers with us. This is me foreshadowing the bone marrow registration drive being organized in Cabin John. More on that later.
Benno
Thursday, July 28, 2005 6:19 PM CDT
Day +10
The mucousitis continues to plague Clare, but generally we had a very quiet day today. We are just getting through the week, so we can get to that better time that the doctors, staff, and those who have travelled this path already tell us is just a few days away.
We've been here over two weeks, and the room shows it. We've been taping up cards and letters, pictures, a big Sponge Bob tablecloth and just today a Sponge Bob poster from Aunt Emily that seems to have been signed by Sponge himself! We also taped up the two full page ads from the Washington Post congratulating Lance Armstrong for his 7th win. We're big believers in the LiveStrong philosophy here at Chez Clare Children's Hospital.
Let's see, what else do we believe: that prayer helps, in the power of laughter, specifically the 8:00pm Sponge Bob show, in food that tastes best when made with love (thank you Zammits/Melkonians for the barbecue, Kathy for the Betty meatballs, Lynn for the seafood salad, and everyone on the food list for all the fab dinners), in the community around a microwave when the only thing you have in common is the worst thing that ever happened to you, in letters from camp, in the friends that talk to you on the phone when you don't make any sense, in knitting, in the friends who are planning to superclean your house, and in being married, because I've seen the single parents on the unit, and it is near impossible to imagine doing this alone.
Karen
Wednesday, July 27, 2005 11:20 PM CDT
Day +9
Clare spent most of today sleeping. It could have been the medications, or it could have been the vomiting. But in the end she was resting, and it's good to see her rest. Everything is becoming an effort. Going to the bathroom. Taking a shower. Sitting up. The importance of her PT is becoming clear, as everything that has happened to her up to this point has weakened her.
And the PT here is so good. You don't feel strong enough to stand up? We'll exercise sitting on the bed. Sitting up makes you feel like you're going to throw up? Here's some exercises you can do lying down. They're ready for anything and no matter what, it's fun. Even with everything that is happening to her, Clare still wants to try the daily PT.
The medications continued to be monitored and adjusted, to Clare's benefit. Although she continues to take Ativan, Clare's not grabbing at nonexistent objects anymore. Today she only threw up once. The button pushes on her PCA seem to have found a rhythm. It seems like the team is finding the right mix.
Of course this is not without it's surprises. The combination of yesterday's TPN and a blood transfusion has resulted in Clare gaining a kilo - overnight. This means that her body is holding fluid somewhere, and before it can get to her lungs she's going to be given a diuretic. Many trips to the bathroom tonight.
As things advance what had been invisible isn't anymore. Clare has a triangular brown spot on her calf - like a suntan - we think it's where the tape that held her legs during TBI put pressure on her calf. The skin around her neck looked tan for a couple of days, now it looks like it has a sunburn, as her skin is breaking down from the combination of radiation from her cranial/spinal sessions and the TBI sessions.
For as much as we write in this journal, there are still things that are too hard to describe. There are hard things that are too intimate, or terrible, and then they pass. Or things that you have to see to understand. Even the nurses will say, "I don't know what this is like, the way you do." And they've seen everything.
So we turn to our new community. Dave and Darlene came all the way down to visit with Clare tonight. Kim was back on the floor. Her son had spiked a fever. The parents of the boy next door to us. He's going home soon. The mom down the hall. Her daughter couldn't get out of bed today. The mom and dad I ran into in the parking lot. Their son is still waiting for a match from the national bone marrow registry. We trade our stories.
Finally, our first letter from Phoebe at camp came today, and I'll end with a quote that probably only my parents will fully appreciate, "Dad was right. Camp is a blast."
Benno
Tuesday, July 26, 2005 8:37 PM CDT
Day +8
Another day, and more anti-nausea meds for Clare. The frequency has slowed down, but the vomiting is still an issue. Today she had Ativan for the first time because of its anti-emetic qualities. All docs and staff assured us that it would make her really sleepy, but alas, it did not. It did make her very loopy so that she saw "television" even with her eyes closed. She also complained about the bed "flying".
Well, it's all about new experiences here on the BMT unit, but watching your newly minted 7 year old have the whirlies was one I could have done without. It did stop the vomiting for most of the day, so we're trying it again tonight, after she's asleep.
Also on for tonight, more red blood cells and platelets. Thank you anonymous donors for taking time out of your summer to donate. I'd like to point out that Children's has a new platelet machine that allows you to donate in about an hour and a half (not including paperwork/interview time). And they bring you Lorna Doone cookies, soda and put in a DVD for you while you recline in the chair.
No word from Patrol Camp so I hope Phoebe is surviving the heat and having a good time. Thanks for checking on us.
Karen
Monday, July 25, 2005 7:41 PM CDT
Day 7
While she sleeps, Clare occasionally snores. Sometimes it's a big snore, ZZZZZ. Other times it's a little snore, zzzzz. Right now she's sleeping through a fever that she spiked at 4:00PM.
It's hard to have it come back after having a day off from the fevers, but our day nurse gently reminded me that it's just too soon for them to go away. There's this balance between optimism and pragmatism that I'm still trying to strike, because sometimes you need one and sometimes you need the other.
Today was a day of visits and consultation. Right after morning rounds Evan from PT came for half and hour of exercises, marching and beach ball throwing. Evan also says, "Hi Chris!" and was glad to hear how well things are going for you.
Then the clowns came. The Big Apple Circus has a Clown Care Unit here at the hospital, and twice a week they come to visit Clare. Since they can't come in the room, they stand on the other side of the glass door and improvise a sketch .
There was the completely silent sketch where Dr. and Mrs. Clown got caught in the cord of the blind outside Clare's door, and then argued with hands and faces about who had left more marks on the glass and, more importantly, who was going to clean them up.
Today Clare had me write in washable marker on the glass, "Clown Toll. All clowns must pay one dollar." The clowns were dismayed. They didn't have a dollar. But they did have a plastic fish. Was that worth a dollar? How about a disappearing handkerchief? Or a pen? They had a pen!
Or one of Dad's shoes? Is that worth a dollar? (I leave them outside the room and wear a clean pair inside.) Okay, how about if I walk back and forth in front of the door with Dad's shoe standing on its toe, balanced on my nose? At that point Clare gave in. That was worth a dollar.
The team was very focused on her pain and her vomiting today. After morning rounds they decided to pull Clare's feeding tube. The TPN infusion last night went well and her mucousitis is advanced enough that the advantages of the feeding tube have passed.
They still don't know what's causing the vomiting, and until they do, all feeds are off. (Mark, I'm trying to turn this into a bad pun by going from "all bets are off" to "all feeds are off", but I'm not having any luck. Wish you were here.)
The TPN comes in two bags. One is a little bag of white fluid. That's the fat. The other is an enormous bag with everything else. I'm having trouble with a comparison this bag is so big.
If you've got a good one - like when the doctors described how much marrow Phoebe would donate (14 ounces) by saying, "Think of a can of Coke, that's 12 ounces." - leave it in the guestbook. The TPN goes in over the course of 14 hours.
Phoebe was happily delivered to the patrol camp drop off. Thanks Meredith! Before I came to the hospital yesterday I asked Phoebe how her day was, on a scale of one to ten. I've spent too much time thinking in terms of the pain scale. Phoebe said it was a six.
We talked about what would have made it a ten until she looked at me and said, "Well, anyway, I'm not going to have more that an eight until Clare is home."
Benno
Sunday, July 24, 2005 9:51 PM CDT
Day +6
Thanks for all the birthday wishes for Clare. She is still feeling lousy, and doesn't even want to plan her do-over birthday. Since planning birthdays is one of her favorite activities (she usually starts in January right after her good friend Diana's party), you know she is feeling bad.
We continue to manage the pain as best as possible. The nausea and vomiting are still a big issue, so the docs are switching from Zofran to Kytril, yet another anti-nausea drug. The doc told Clare today that "there are a lot of different drugs in the cabinet we can try, so keep telling us how you feel," which I thought was really an excellent way to put it to a 6 (I mean, 7) year old.
The platelet transfusion did the trick, and her platelets are back up to a better range--30,000 I think? I don't have the notebook with me. Her ANC continues at zero as expected, but her hemoglobin is holding at 8.3, which considering the lack of working marrow, isn't so bad.
Phoebe leaves tomorrow for her first ever week of sleep away camp. She and I both had a small attack of nerves at the thought this evening, but I don't think she noticed mine. And if Phoebe is true to form, she'll take off tomorrow with not even a backward glance. This is 5 days of safety patrol camp in Emmitsburg, Maryland. We've packed enough for a summer away, I'm afraid, and that was just going by the suggested list.
Big shout-out to Cousin Isabel (from Ohio) who will be checking the website from her summer camp in Maine. I've visited this camp, and would like to attend myself although they don't seem to have a tent for over 40 set. I'm glad the rare (possible sole) electronics exception has been made in this case. We have cousins from both sides of the family checking in, and that is so fabulous for us.
Karen
Saturday, July 23, 2005 7:41 PM CDT
Day +5
Clare spent the day in bed with the lights turned down, listening to music or watching Arthur. Just about every staff member on the unit came by to wish her a happy birthday, but she was having none of it. There's just too much injustice in feeling so rotten on your birthday. Wouldn't even listen me read good wishes in guestbook.
So we decided to not to have it. Save it for later. Until she feels like having a birthday. Birthdays should be fun, and you should feel good. And if you haven't picked up on it yet, BMT patients often consider their transplant date a second birthday. So in the space of five days Clare will now celebrate two birthdays.
Last night was a relatively quite night - Clare was only up four times in the night to pee, and threw up once. But the feeds were turned off when she threw up and as she continued to get sick during the day, we're now we're in feed limbo. The team is concerned about how much she's throwing up and has ordered blood labs and x-rays of her belly and chest to make sure of what it's not. But we did get to have a field trip, with a mask on, to radiology. This also let Clare meet her get out of bed and sit up requirement for today.
Hopefully we'll get the feeds back on soon. Even if they augment Clare's nutrition through her central line with TPN, we still want food going through her stomach. And I've reached the horrible point - the one all parents get to - where you think, better to throw up *something* rather than nothing.
After talking with Clare today, the pain management team wasn't happy with her pain level - the morphine lets her tolerate the pain, but not manage it, is the way we've been describing it - so they've changed her to Dilaudid. We're told it's one step up from morphine. And I always thought heroin was one step up from morphine.
Clare also had her first infusion of platelets today, as her platelet count is too low. She will get them at regular intervals. This is good, and this is also the point in the BMT journal that I ask you to consider donating platelets (No kidding, look at any other journal for a BMT patient on the Caring Bridge site. We all ask for you to donate when the first platelets come. It's part of our code.)
Here's the deal. You call, ask about the requirements, and make an appointment with the blood donation center here at Children's, or the hospital of your choice. They all need platelets and blood, trust me. Then you come in sit in a giant chair for three hours with a needle in your arm. While you sit there, the blood is taken from you, run through a big machine, has the platelets removed, and then put back into you. Sometimes your lips tingle, and you feel cold.
Since my wife organizes our neighborhood blood donations, I've donated enough blood to tell you that the Children's people really know how to put the needle in your arm. The whole process is organized and efficient. There's snacks. And they need the platelets. Did I already say that? In the 30 minutes since if started writing this I've heard two helicopters land. That blood's got to come from somewhere.
Finally, I've spent almost the whole day telling Clare's nurse how "we're" feeling, and what "we" need and asking when "our" results will be back. There are times in these little rooms where the line between parent and child gets a little blurry. Blurry, blurry, blurry.
Day five, Clare seven.
Benno
Friday, July 22, 2005 10:02 PM CDT
Day +4
Long day of not feeling so great for Clare today. The mucositis continues to develop which is very uncomfortable for her, and makes her sick to her stomach on a pretty regular basis. She also developed her first post BMT fever, which was expected even as I'd hoped she'd be the exception to the rule. In any case, she's now on antibiotics and antifungal medications while they run the blood cultures to rule out any line infections.
Her counts have dropped as expected. Her ANC is a whopping 72 (with 500 being the bare minimum for any immune protection, 1000 the standard goal while on treatment, and "normal" ranges are above 1500).
Grandma goes home tomorrow after two long weeks spent caring for Phoebe and all of us. I'm afraid she has done more laundry than almost humanly possible, including every curtain in the place. She went into the hospital yesterday to see Clare for a few minutes, and then was the sole family presence at Phoebe's camp play today. What a grandma! She deserves a medal.
Many thanks for all the presents and cards that keep appearing in the mail and on the front porch. We really appreciate the outpouring of love.
Karen
Thursday, July 21, 2005 10:23 PM CDT
Day +3
Buttons and Alarms
Trading with Karen last night, I had a chance to see Dave and Darlene as they dropped off food, toys and the kind of moral support that only comes from having lived through all this. If you haven't read Darlene's last post in the guestbook, stop and read it now. Done? Okay. Now you know what I mean.
Last night was reasonably quiet for Clare. She began to ask for a dose of morphine every time she went to the bathroom - almost every two hours. This meant that she slept through several alarms on her pumps, mostly when an infusion was complete, and occasionally when there was a mechanical problem - the feeding tube had a problem just before Clare woke up and was temporarily turned off. I pressed the nurse's call button more than I had since Clare was admitted.
With all the morphine, she still woke up with pain in her throat, and threw up before we could settle into morning television. Breakfast came and for the first time, I turned it away, instead of trying to cajole (nag) her into eating something, anything. Why add to the misery?
You know the little angel and devil that are supposed to appear on your shoulders and argue with each other? Well, in the hospital room they become two little parent versions of you. One wants to make things better *right now*, and the other wants to do *everything* to make things better for good. And that's what they argue about.
So, "Make her try something! Maybe this time she'll have an appetite." and "She's miserable, just let her stomach settle!" plays out on opposing shoulders. And the results are pretty inconsistent. On the one hand I didn't make her try breakfast, but an hour later I was force marching her into the bathroom for the first of four daily rinses with Peridex (http://en.wikipedia.org/wiki/Peridex).
Turning off the feeding tube eventually means you have to turn it back on, and that didn't go so well. The sensation of the feed passing trough the tube made Clare throw up again and the nurse left it off while she consulted with the doctors.
Clare also asked to keep the room dark this morning. We didn't really turn on lights until morning rounds at 11:00 AM. The doctors ran down the questions we had from the previous day with me. They were very concerned about keeping the NG feed going, so Clare is now on Zofran (http://en.wikipedia.org/wiki/Ondansetron) 24 hours a day. The discussion during rounds this morning was so routine that I was actually comforted. As hard as the throat pain is for us to deal with, it's expected, it's normal.
The rest of the morning was spent taking trips to the bathroom, and watching TV. Towards Noon we had a TV break and took turns picking songs to play on the iPod - it's plugged into a speaker - and that was a nice change of pace.
The nurse came in to tell Clare that the doctors had ordered a PCA pump for her morphine (No surprise, considering she was asking for morphine every two hours.) and to restart the feeding tube. Things went a little better. Clare was nervous when we started, but we distracted her with TV and she made it almost an hour before she threw up. Then a little more TV until she fell asleep around 2:00 PM. By the time I left at 6:30 PM she still was holding the feed down.
During Clare's narcotic induced sleep she started do the little creepy things she did the last time she was on morphine, sleep with her eyes half open, talk loudly to people who weren't in in the room, and look right past me as she tried to take things in.
At 3:00 PM I asked for Clare's next dose of morphine, the last before the PCA, and it went well until the pump went into alarm. Then we had one of the times on the floor that I dread, where it takes 30 minutes to get someone into the room. But after an equal number of presses on the call button on Clare's bed and the silence alarm button on the pump, Clare nurse came in with the PCA. I also learned the word "occlusion".
Getting the PCA set up meant moving all the pumps from their pole to the pole the PCA was on (Two poles on a 3:00 AM trip to the bathroom? I don't think so.) Around 4:00 just as everything was straightened out, Clare woke up, the physical therapist came in and Karen arrived. Which made the eleven paces wide room seem very small.
I left to take Phoebe and Grandma to an early dinner in the cafeteria, while Karen helped with PT which didn't really start, Clare was so uncomfortable. Even with all the inactivity, or maybe because of it, Clare is so tired at the end of the day. Karen and I agreed that morning PT is the way to go.
After dinner I checked in with Karen and Clare, who had already pushed the button on her PCA twice while they were watching the 6:00 news. Clare was included in a segment on Maria's spinning class who have been fundraising for the Lance Armstrong Foundation. In the segment, Maria explained that she had a young neighbor who was beating cancer. Again. And she showed a beautiful picture of Clare riding her bike taken by Greg.
Many thanks to Maria and her class for passing the story along. We are by no means the only family in the BMT unit, and the money that goes to cancer research means that the number of families like us will, hopefully, get fewer and fewer.
Benno
Wednesday, July 20, 2005 10:45 PM CDT
Day +2
Clare continues to do well, but we've had a taste of things to come in that she is getting sick fairly often. The radiation and high dose chemo causes the lining of the GI tract to become inflamed and irritated, eventually forming ulcers and mouth sores. This is called mucositis, and it is very unpleasant. We haven't actually seen mouth sores, but it seems obvious that she is in a lot of pain, especially in the throat. Luckily, the transplant docs (and really, all the staff) at Children's are very good about pain management. Everyone looks for ways to alleviate the pain and discomfort. Today's relief was based mostly on morphine, and I think the morphine pump will soon be making its appearance.
But not all of today was miserable, in fact, mostly it wasn't. Clare continues to love physical therapy time. The PT comes to her room, and they toss around a beach ball (highly disinfected beach ball) while she balances on this cushion that is slightly unstable. Anything to get her out of bed and moving around. We danced the Hokey Pokey. We played some cards and watched a ton of TV. We read a whole Magic Treehouse book in one sitting because it was the really good one about tornados on the prairie that swept over Jack and Annie in a one room school house. So I told Clare that Aunt Nancy (my sister) used to teach in a one room school house (because they still have them in certain parts of Nebraska, not because she was a pioneer--Hi Nancy! Hi Hafer cousins!) and she totally didn't believe me! A trip out west is definitely happening once we're done with all this.
Dave and Darlene Melkonian stopped by the hospital bearing food, treats, and essentials of the chocolate brownie variety. Carrie and Leah Holdcraft stopped by yesterday (Leah, like Christopher Melkonian, is a transplant alumni). I can't even tell you how great it is to have the experienced BMT parents to follow.
Phoebe shook off any remaining stiffness in her hips today, and went off to Adventure Theatre camp today. She has thoroughly enjoyed the presents, flowers, and balloons that have come her way since Monday, so thanks to all who sent them. My children are amazingly blase about this whole donor/transplant process. Phoebe, in particular, has been slightly bemused by all the attention showered upon her. Hey, a complete stranger in the surgery waiting room told Phoebe how proud she was of her being a donor! Of course, later it came out she was another cancer mom, waiting to hear back from National Bone Marrow Registry on behalf of her son.
We're lucky and grateful, folks. Every time I have a how can this be happening to our family moment, I immediately think, thank you Lord that things are working out the way they are for us right now.
Karen
Tuesday, July 19, 2005 10:18 PM CDT
Day 1
Clare was closely monitored throughout the night, which resulted in a chorus of beeping and pinging whenever there were slight fluctuations in her vital signs. Fortunately, nothing was out of the norm as she was taken off the monitor just before breakfast.
Breakfast didn't leave the tray, which made us more confident about the NG tube, but it hasn't been without it's own complications. Clare is continuously fed through the tube and that's been fine, but they can also administer meds through the tube - rather that having her swallow them - and that hasn't been going as well.
Clare had tylenol earlier today and she felt very queasy as it went through the tube. This could be the result of the temperature difference in the meds vs. the feed and how her throat reacts to it. Or it could be her own anxiety. Either way she now is very sensitive to things in her throat, inside or outside the tube. She says she can feel someting in the back of her throat when the meds go in. Darlene, did you hear this too? Anybody else?
The reason Clare was getting tylenol is that she has started complaining about a sore throat. This could be the beginning of her mucositis, so while we were trying tylenol, orders were already being written for morphine. As we saw with Clare's leg pain during diagnosis, Children's takes pain management very seriously. And Clare's transplant team was not going to wait around for the pain to get worse.
At home, Phoebe and Karen had slept in because they didn't get released until 1:00am. Phoebe had to wait for a CBC before she could be released and by the time the results came back it was late. Rather than get up early in the morning to leave, Karen decided to taker her home then and slept walked Phoebe down to the van.
At 3:00am, I came by on my way to the bathroom and fortunately stopped by a nurse before I walked in on some other patient who had been given Phoebe's. In the hospital I think there's this time of night were all the parents wake up half way and then wander the halls looking for something until we're finally guided gently by the nurses back to our children's rooms - zombie parent time.
While Clare and I punctuated our games of Go Fish, and Sorry (Dad, you are going to be *sorry* you ever agreed to play this game!") with Arthur DVDs, Phoebe recuperated at home and Karen make it to an old doctor's appointment for her elbow that she had to put off.
Many thanks to Louise for giving up her spot at the doctor's office so Karen could get to the hospital earlier today. Having time to eat before getting to the room makes all the difference and it can be hard to find the time for more than a sports bar and a bottle of water. We actually had a good 15 minutes in the cafeteria together.
Also thanks to Greg, Maria, Lisa and everyone who has been supporting Phoebe in all of this. The staff at Children's has been concerned that Phoebe has not been getting enough attention with all the focus on Clare, and they are always pleased when we describe all the support and attention that Phoebe is getting during all of this.
Karen just messaged me and while the evening started out okay, Clare woke up in severe pain an hour ago and within 15 minutes was given her first dose of morphine. It dripped in over 15 minutes and Clare went back to sleep. Or as Clare can tell you based on past experiences with pain, "I love morphine."
Benno
Monday, July 18, 2005 4:16 PM CDT
Day 0
Today is bone marrow transplant day . . . just minutes ago at 4:43pm a bag of Phoebe's very deep red marrow was hooked up to Clare's central line.
Phoebe's bone marrow harvest surgery went well, and she has had no ill effects from the anesthesia. She is very sore in her hips from the needles used to extract the marrow (affectionately known by the staff as the "nails", which may be too much information for some of you).
Phoebe is relaxing in a room just down the hall from Clare, but outside the BMT unit, and should go home this evening. We've been told she can come into the unit to wave to Clare through the door.
The marrow will drip in over three hours, and that's how you have a bone marrow transplant.
Thanks for your many thoughts and prayers as we begin this important part of our journey.
Karen, Benno, Phoebe and Clare
Sunday, July 17, 2005 10:03 PM CDT
Day -1
After two days of not eating, the doctors decided today to use an NG tube to feed Clare. This is to ensure that her digestive system will continue to function properly during her treatment. And they argued, reasonably, that it would be better to do an uncomfortable procedure now, while Clare feels relatively good, rather than later, when she feels rotten.
We weren't surprised. In our first meeting with the transplant team they made it clear that an NG tube was the preferred way to feed her when she stopped eating. But like so many other procedures, we're a little behind the team. Karen and I had agreed that we wanted one day off the chemo before the tube was inserted. But talking about it today we realized that no matter what day they told us, we would still want one more day.
On Clare's transplant calendar, today is officially called "Day of Rest" and fortunately we did have some time for renewal and a chance to give thanks. Phyllis, Phoebe and I made it to St. Patrick's for the 10:00 AM service, and then our Rector, Assistant Rector, and Seminarian all took communion to Karen and Clare.
Karen just messaged me and said that Clare is sleeping and gagging less on the tube. And, of course, she's being fed. Hopefully we'll all get a good night's sleep tonight.
Tomorrow is Day 0.
Benno
Saturday, July 16, 2005 8:58 PM CDT
Day -2
Yesterday, the Child Life Specialists visited Clare and left her a detailed daily schedule, breaking the day up into one and two hour blocks. At least half of these activities fall into the get out of bed category. Unfortunately, most of it went out the window today.
Things were going pretty well when I got to the room this morning. After Karen left, Clare and I chatted, worked on trying to get Belle through the locked door inside the castle (Diana help!) and played a round of Go Fish. We didn't quite make it to the end of the card game.
Just as we were heading into lunch time Clare threw up. And then started to have throat pain. The pain was severe enough (I forget what number weeping is on the pain chart) that the nurse and doctor both took a look at her. Within an hour we had our choice of tylenol, Chloraseptic, and the infamous "magic mouthwash".
The tylenol seemed to take care of it, but it's nice to have some choices on the shelf because the pain wasn't specific to one place. Clare felt it in her mouth, her throat and her ears. And the cause of the pain wasn't clear, so we can only see if it comes back.
While we were waiting for the pain meds to come Clare sent me to the video closet for any Arthur videos I could find. Arthur, the grilled cheese sandwich and tomato soup lunch on my daughters' television menu.
After the tylenol kicked in we listened to some of the quiet music on her iPod and she napped for an hour or so. The nap and the pain meds definitely helped, but Clare's (empty) stomach was still bothering her. So more Arthur was in order.
The evening was, more or less, a repeat of the morning. Play cards. Take pills. Try food. Get sick. Lie in bed with a hot pack. Listen to music. On the upside we got a shower in, we sang along with some of the music, and her throat was much better.
Benno
Friday, July 15, 2005 8:07 PM CDT
Day - 3
I started to write this update by saying that we had a quiet day, a normal day on the BMT unit. But it strikes me that Clare staying in a room that I can walk the length of in roughly 11 steps without leaving is just not normal. I left twice to use the bathroom and wolf down some food, but Clare is no longer leaving this room. I had been thinking about what exactly isolation would mean, and today has kind of given us a feel for it.
Weirdly, Clare isn't bothered by it at all. She is still happily watching way too much television, playing with her Tamagotchi, beating the pants off me at Go Fish, and reading today's Magic Treehouse Book.
Benno and I trade off every other night/day combo so that Phoebe doesn't feel too abandoned, and so Clare gets time with both of us. As every working parent will recognize, this answers all needs, but doesn't make anyone completely happy. I'm always thinking of the place where I'm not present.
And, I feel a bit somber because as I was eating in the parent room, I was an accidental witness to another mother dealing with those first hours after a child's diagnosis. I wanted to leave her in peace to cry on the nurse's shoulder, but we can't eat in Clare's room and I only had 5 minutes left of my self-imposed 20 minute break. I tried to just sit at the table invisibly eating pot pie and sending those supportive vibes.
For the record, pediatric cancer is awful in any form it takes. If you pray, please do for this woman and her family.
Today was Clare's first high dose Cytoxan which dripped in via her central line over a 30 minute period. She has been on constant iv hydration also as this is one toxic drug so the kidneys have to be protected. She's had some issues with nausea, but so far so good on the scary side effects. Tomorrow (Sat.) is another dose.
Thanks so much to the food list folks who have been bringing us such wonderful meals. They are so appreciated and make us feel so loved. The love and support, the prayers and the good wishes really help us all through the day.
Have you read the poetry in the guestbook? Uncle Mark is the greatest.
Karen
Thursday, July 14, 2005 9:59 PM CDT
Day -4
It's 9:12 PM and I am listening to Clare yawn. The unit turns down the lights in the hall at 9:00 PM, officially marking the end of the day, so with the lights out, the room is pretty dark.
Just before Clare fell asleep, the nurse came in to hang a bag of fluids that Clare will be getting all night to prepare her for the large dose of cytoxan she'll be getting around 8:00 AM tomrrow.
We had been playing Sorry on the bed, a board game I remember playing with my sisters when I was somewhere around Clare, or Phoebe's age. The board fits nicely at the end of the bed, and there's not a lot of pieces, so there's less of a chance to have something go overboard and then have to be wiped off in the hall.
We started the game after I had my dinner in the Ronald McDonald room. Clare was feeling pretty good, so I grabbed my leftovers and had a quick meal. Nothing against the hospital food, which could be a lot worse, but the meals we are getting at the house are so good that it's impossible to pass on the leftovers. As I was heating up my chicken pot pie I got a "Hey, where'd you get that?" look from one of the other parents in the room.
There's such a temptation to just start eating junk, while you're here and it's so great to have real food so readily available. If you're anywhere near a Ronald McDonald House/Room find out if they need some home cooking. That big dish of whatever you make for pot lucks? It's the best thing we could be eating right now.
Before we started the game, Clare watched some TV and had dinner which was kind of a bust, but she did eat a whole slice of bread and drank a small bottle of water. All her food is throughly cooked and then microwaved again here on the floor. This is partly for convenience and partly because she is on a "low bacteria diet". It's the latest thing now that low carb diets are loosing popularity.
Dinner came about an hour after we got back from the last visit to NIH. Traffic seemed bad on the way back, so the return trip took a little longer. These trips to NIH break up the day so nicely that I'll miss them.
On the other hand, Clare's nurse (who's been on all these trips and the continuity has been wonderful) fussed with Clare's pajama top to make sure the stretcher's seatbelt wasn't touching Clare's belly saying, "Let's get you covered up honey, the last thing you need right now is a scratch. So maybe I won't be missing the rides that much.
As this was our last session, Clare was given the hero's send off. And Phoebe was given hugs and thanks by the techs for all the little tasks she's adopted, like opening the doors and talking over the intercom.
We've heard that these sessions can be two or three times as long, when the patient won't stay still, or gets upset. Adding Phoebe's imagination to Clare's pluck seems to have produced an unusually uneventful set of sessions which the staff really appreciated.
Phoebe came a little late as she was coming from errands and lunch with Karen and Grandma. We thought Phyllis might like to see things like the giant door and the multi-million dollar radiation machine. Her tax dollars at work.
Just as we came into the clinic for the afternoon session, I was offered a bagged lunch by one of the clinic administrators. They have lunches set up for all the patients and families coming in that day. The administrator pretty much insisted I take one, and as we can't eat in Clare's room and Clare hates to be alone it was a welcome convenience.
As we were walking out to the waiting room to get the lunch, she told me that she had spent many years in the hospital with her own daughter, and had always appreciated a quick sandwich when she could get it.
These stories are all around us, and I think they are behind so much of the kindness and support we're getting. Hopefully ours now is too, for someone somewhere else, who just needs a sandwich and an apple before they get back to the person they're taking care of.
The time between the visits to NIH was short. Time enough for mouth care, bactrim, and a preemptive zofran, a few bites of the cheese pizza that came for lunch, and a quick round of Disney Princesses on the GBA.
The first session also went well. Clare has met this treatment with the same (sometimes reluctant) determination that she's met all her other treatments with. Karen and I drank coffee and watched Phoebe dance in the lasers they use to target the radiation. The CD player in the room was playing some quiet jazz, but watching Phoebe twirl in the green and red light, I kept expecting to hear something from "Dark Side of the Moon."
The day started with getting Phoebe up early so we could get coffee for Karen before we met her at NIH. This morning was one of those mornings that just clicked and we were at the radiation clinic in time for Phoebe to unlock the door to the access tunnel, watch Clare throw both arms in the air and hear her scream with delight. "Phoebe!"
While I've been writing this Clare has already had her vitals checked, a second bag of fluids has been hung, and she's sleeping quietly. I expect a few extra trips to the bathroom tonight, but otherwise, things should be quiet.
Benno
Wednesday, July 13, 2005 11:30 PM CDT
Day -5
Just before 1:00AM Clare woke up after sleeping for almost six hours. She had a few sips of water, and after eating a cracker asked for a hot pack to make her stomach feel better. The hospital has these great chemical hot packs, where you hit it and an inner bag breaks mixing the chemicals and creating the heat. Kind of like snapping a glow stick. We both fell asleep waiting for the hot pack to calm her stomach so she could have another cracker.
At 4:00AM Clare had a blood draw through her central line. Neither one of us woke up.
To be ready for the ambulance ride to NIH, we got up at 6:00AM and Clare had some Cheerios, some water, and a Zofran. Then the two ambulance crew members, the nurse, Clare, and I were off up Georgia Avenue to East West Highway, and over to NIH.
The building where Clare gets her radiation therapy is brand new, but the fastest way between the ambulance bay and the radiation clinic is through a unfinished service tunnel with pipes running along the ceiling and fork truck traffic lines painted on the floor. Clare wears a 3M dust filtering mask.
Coming through the doors to the clinic, Clare started shouting. There was Phoebe, who had come with Karen to keep Clare company. Phoebe helped Clare get set up for the treatment, watching her have her legs taped together with a bag of rice between them (there can't be any air spaces), and have a big sheet of plexiglass put between her and the radiation machine for diffusion.
The radiation - 5 short session on each side - took about half an hour. Looking at the video monitor you could see that in the x-rays vs. zofran contest, the x-rays were winning. Once she was done, though, bounced back a little. I took Phoebe off to Adventure Theatre camp, and Karen went back across the top of DC to Children's.
Karen tells me the rest of the day was quiet and that Clare's appetite came back a little. By the time morning rounds had made it to the room, Clare was eating bacon off of her breakfast tray. The afternoon radiation session went well and the side effects seem less than yesterday.
Clare was eating the hamburger - no bun, thanks - off of her dinner try when I called tonight. Karen went to the cafeteria for some dinner, and ate it in the Ronald McDonald room. So there's 20 minutes where I'm sure that Clare was feeling okay. Otherwise, she never would let Karen out of her sight.
After camp, Phoebe came home to a surprise. The families in her Girl Scout troop had sent her a huge basket of treats in anticipation of her trip to the hospital. Several games of cards with Grandma, a wonderful dinner and a phone call with Nana later, Phoebe went to bed, so she could get up early and see Clare again at NIH.
Tuesday, July 12, 2005 8:55 PM CDT
Day -6
Clare's first rounds of total body irradiation began today at the National Institutes of Health. The ambulance duo picked us up in the bone marrow transplant unit at 6:30am sharp, and we had an uneventful ride to NIH. This particular ambulance had a DVD player so Clare watched, what else, Sponge Bob during the 30 minute ride. Benno met us there since NIH is much closer to home than to Children's. And he brought me coffee which is yet another reason why he is the best husband in the world.
The morning procedure took a long time, with 4 x-rays and lots of arranging of Clare's body just so, right down to taping her legs together. Much time was spent getting the placement of the little triangular block that protects her lungs from the radiation just so. Then the actual treatment is only 20 or 25 minutes long.
The ambulance crew and the nurse from Children's waited for us, then back we drove to Children's, arriving at the BMT unit about 11:30am. Then they picked us up again about 1:30, and back we drove to NIH for a repeat of the 25 minutes of radiation. Then we got loaded back into the ambulance and drove back to Children's. We'll do this for two more days.
In past entries, I've taken great delight in listing all the foods that steroid Clare would pack away. Today, I have to report that only a bowl of cheerios was consumed. Even with anti-nausea drugs, she was sick several times morning and afternoon. We'll see how the sessions tomorrow affect her, but I'm not holding out much hope for the return of the big appetite. Of course, Clare has been known to surprise us.
Phoebe is enjoying camp and Grandma's full attention quite a bit. All the staff at NIH looked for her today when Clare came to the radiation room, so the Schmidt girls have made something of an impression on the Radiation Oncology department.
Karen
Monday, July 11, 2005 10:38 PM CDT
Day -7.
At 5:30 this evening, Clare checked into Bone Marrow Transplant Unit in the Hematology/Oncology department on the fourth floor of the Children's National Medical Center.
When we got to the first desk, one nurse asked Clare if she wanted to run around a little. Clare said no, she just wanted to go to the room. The next nurse asked Clare if she wanted to go to the cafeteria and have some dinner before she went in. Clare said no.
We reminded Clare that once she went in, it was going to be a while before she could come out. And again, she said she just wanted to go to the room. So we took Clare to the room where she took everything off, had a shower, got into double-washed pajamas, hopped into bed, and turned on the TV.
Karen went downstairs to fill out the admissions paperwork and grab a quick dinner. I stood in the hall and wiped down everything that went into the room with antiseptic wipes. We had three doctors visit us in as many hours to see if we had any questions. The consent form was signed.
Then we spent the rest of the evening with little stuff. Who has keys to the locker? How do these lights turn off? Do you set your modem to v90 or v30 to connect to your isp? What time will the ambulance take Clare to her radiation therapy at NIH?
In the halls, behind the desks, on rounds and in our room we saw a lot of familiar faces. People who have helped us in the past, the people who will help us now. There was a new face there, Kim, whose son had gone through transplant earlier this month. She had many good things to tell us. The kind of things we needed to hear.
Finally, I gave Clare and Karen a kiss goodnight, drove back to the house and woke Phoebe up to give her a kiss goodnight too. And today is July 11th. Unfortunately for the 7-11 company, I'm never going to see those numbers the same way again.
Benno
Sunday, July 10, 2005 9:01 PM CDT
We've had our last weekend before the transplant procedure and it was a quiet, normal three days.
Friday morning we arranged for some quick improvements to our kitchen (partly out of necessity, partly for peace of mind), and we all stopped at the coffee shop for coffee and a treat. In the afternoon Clare had a few friends over, and then we had a family night at home. Everyone managed to sleep through the night (Karen and I have had some run-ins with insomnia. I highly recommend reading any computer manual if you have this problem. Zzzzzz.)
Grandma arrived early on Saturday morning just after the girls and I got back from a quick run to the book store where they completed (I think) their Magic Treehouse collection. The girls spotted her out the window and practically flew to the door to welcome her. Immediately she took charge of all laundry, cooking and mending. Phoebe Ruth got a spectacular pair of red chinese pajamas from Aunt Phoebe and Grandma had them hemmed up it a snap.
With things settled at the house here, Karen and I were sent off to go on a date (!) and managed a trip to Home Depot, Target, dinner and a movie all in one night.
Today we went to church while the girls stayed home with Grandma (too many germs for Clare right now) where we had a chance to renew ourselves, pass the peace, and thank everyone at St. Patrick's who has helped us so much. The rest of the day was spent sorting out things for the hospital and packing up things that need to be put away when Clare gets back.
While Karen and I were packing doubled washed clothes in 2.5 gallon ziplock bags, the girls started to sort out the dress-ups and begin to discover lost things. "Mom, I found my old apron I made in pre-school and it still fits!" which started a long discussion on what constitutes fitting and what doesn't. After some discussion the four of us finally reached consensus on this rule of thumb: If it hurts your ears as you take it off, then it's too small.
Tomorrow (or today, depending on when you're reading this) we will take Clare to the hospital at 5:00 PM and have her admitted to begin the procedures that will lead to the transplant. We'll be taking laptop with us, and we're hoping to keep the journal up to date.
It's impossible for us to thank everyone - all of you - for all your support. But we can say this: Without you we would not have made it this far. Thank you.
See you in the guestbook.
Benno
Thursday, July 7, 2005 10:03 PM CDT
We are trying very hard to have fun every day, and today was no exception. We finally got together with the Melkonians to discuss how to have a bone marrow transplant. Their son Christopher is almost one year out from his transplant. Christopher and his donor sister Samantha answered a lot of questions, and made me feel so much better about so many things by just being so great. And so normal. Nothing fazes this family! We want to be like them.
We actually kind of wish we had met them some other way than in the cancer clinic, but Benno and I are having a "no wallowing in self-pity" week so I won't go into that.
Clare's pulmonary function tests were yesterday, and completely unlike anything she had ever done before. She breathed in, breathed out, huffed and puffed like nothing I've ever seen, mostly while sitting in a big clear plastic booth. We got a little silly making faces at each other, and generally fooled around a lot, which may or may not have endeared us to the really nice technicians running the tests. Clare's attitude is if it doesn't involve drinking a quart of contrast fluid or needles in the back, then test away.
Phoebe swam in a B team meet last night, and took several seconds off her seed time in a couple of strokes. She continues to do really well even though our schedule has made it difficult to get to all the swim practices. Several of Clare's classmates were on the other team, so it was a social night for both girls.
We're hanging in there. Thanks for all the cards, calls, emails and guestbook posts.
Karen
Tuesday, July 5, 2005 6:51 PM CDT
We had a very long day at Children's today. Clare had a CT scan, an echocardiogram, blood work and the usual exam. Phoebe had a physical, and blood work which consisted of giving 9 vials of blood. What a hero! We spent the entire day tramping from one waiting room to another, often with receptionists saying "did you know you were supposed to be in Cardiology (or pick the specialty) an hour ago?" I spent a lot of time trying not to bang my head against walls.
We had to treat ourselves to Ben & Jerry's on the way home to recover. We go back tomorrow for pulmonary function tests for Clare, but hopefully it won't be another long day.
Our quick escape to Delaware over the weekend was very satisfying as we got to see the Andrews (minus cousin Jamie who is away at camp) as well as Nana and Grandpa. We also got to take naps, and read books that didn't have anything to do with stem cells or blood counts. Phoebe and Clare really maximized their time with cousin Isabel, so it was a successful weekend on all accounts.
The Palisades Pool Leukemia Swim-a-Thon was a big success. Phoebe swam 50 laps without a break! I didn't count how many kids participated, but every lane had at least 3 or 4 kids swimming hard on the 4th of July, and I know that they raised a good amount of money. Thanks so much to all who sponsored Phoebe and Clare. Clare's counts and energy level didn't allow her to swim, but she acted as a lap counter, and was right there front and center for the team photo at the end.
We feel very lucky to have such a supportive community. Thanks to everyone involved, but especially those swimmers and their parents who got up early and worked really hard on a holiday Monday. Go Palisades Porpoises!
Last night the girls and I drove to Gaithersburg for the fireworks at the Fairground. I adore fireworks, and will sit through just about any traffic jam to get to them. Our backyard neighbors Bob, Lisa and Joseph and our around the corner neighbor Aidan found us quite by chance in a huge crowd, so we had an impromptu fireworks party.
Sometimes, it's the things you don't plan that work out the best.
Karen
Saturday, July 2, 2005 10:35 PM CDT
Another last minute getaway for us to Benno's folks in Delaware. Back tomorrow (on Sunday). Clare is feeling fine. Watching her play with Phoebe and her cousin Isabel, it is hard to imagine what the coming weeks will bring.
Today, we had early birthday cake, early sparklers and just a happy time.
Karen
Friday, July 1, 2005 3:05 PM CDT
The last two days have been filled with doctor appointments for Clare. It sort of seems like all we do is drive from office to office. Clare had her pre-transplant dental appointment at Children's downtown yesterday, and then a neuro-psych work up at Children's in Rockville today.
We finished the last of "Camp NIH" today, as Clare had her last cranial radiation this morning. She got to take her mask home. She and Phoebe were playing with it in the big atrium in the Clinical Center at NIH which was a little surreal for the people getting coffee in the cafe. Shades of Christopher Melkonian for those of you who know our young friend who had a transplant last August, and is famous in certain circles for his Alien impersonation with his radiation mask.
Well, we take our entertainment where we can get it these days. My girls were actually kind of sad that our trips to NIH were over. The next time Clare goes for radiation it will be via ambulance from Children's for her total body irradiation just a few days prior to the transplant itself on July 18.
Next week is even more pre-transplant appointments including another CT scan, a pulmonary function test, an EKG, and probably a few things I've already forgotten. I'm running a little distracted these days, so if I owe you a phone call, I apologize. If it's important, you might want to email/phone me again!
Karen
Tuesday, June 28, 2005 9:32 PM CDT
Our meeting with the head of the transplant team was yesterday. Clare also had some blood work while we were there as they just don't seem to miss an opportunity these days to test something.
We finally have some dates:
Monday July 11: Clare admitted to the hospital
Tuesday July 12: Clare begins twice daily total body irradiation (TBI) appointments at Natl. Institutes of Health (NIH). She will be transported via ambulance with me and/or Benno riding along with her.
Wednesday July 13: TBI
Thursday July 14: TBI
Friday July 15: Clare begins high dose cyclophosphomide (cytoxan). She had this drug during her first treatment, but not at these doses.
Saturday July 16: high dose cytoxan
Sunday July 17: day of rest, literally, from all treatment
Monday: July 18: Phoebe arrives at hospital at 7:00am for general anesthesia and bone marrow harvest. By early afternoon, bag of prepared marrow will be connected to Clare's central line for infusion (takes less than an hour). Phoebe will get to see Clare after resting a few hours after her procedure. Phoebe will go home that night.
The radiation continues to go well, with Phoebe and Clare really enjoying the staff at NIH, especially Nurse Theresa who plays 20Q with them every day. Also fun today was a couple of hours at the pool with Alexandra and Caitlin Schoen. Clare was playing in the water right there with them until wearing out at the very end. She doesn't have many more swims left before transplant, so it was particularly nice to see all of them playing so hard.
Speaking of swimming, Clare and Phoebe will be raising money for the Leukemia and Lymphoma Society at the Palisades Pool LLS Swim-a-thon on July 4th. You can pledge per lap or give a donation. The Palisades Porpoises Swim Team (and Heidi Bumpers, in particular) are being super supportive to our family by organizing this fundraiser. All donations go to the LLS for research and education on leukemia and lymphoma. We've certainly benefited from the LLS seminars we've attended, and from many of their educational publications.
Thanks for all the support from everyone as we approach the DAY.
Karen
Monday, June 27, 2005 12:38 AM CDT
We're just back from an escape vacation as requested by Clare: "let's take a trip where we get to stay in a hotel!" We left Saturday morning for Solomons Island, Maryland where we stayed at the Holiday Inn and ate out for every meal! We had a wonderful time: spent hours at the Calvert Marine Museum and took an hour boat cruise on the museum's boat, the Tenison, whose captain let Phoebe and Clare take the helm--very exciting!
On our boat cruise, we went right past a University of Maryland research lab where we saw an osprey nest, complete with mom and baby ospreys, on their pier. Luckily, they have Osprey Cam so we can continue to check up on them: try this link, then click on web cam/osprey-cam.
http://www.life.umd.edu/biology/paynterlab/video
On Sunday, we hiked almost 4 miles back and forth to the beach at Calvert Cliffs State Park. Hey, a week of radiation doesn't get you off the hook in this family--we always take the long way to the beach. We found a few fossils (or so we think), and really enjoyed ourselves, except for the vociferous complaining about the hiking distance from SOME members of the family. So the trail was a bit flooded in places, that doesn't stop us! If you can survive 28 days of some of the toughest chemo that the oncology community can devise, then you can scramble off-trail a bit to avoid the flooded marsh caused by overeager beavers or some very poor water management by the good folks at the Calvert Cliffs State Park!
I can tell that the next vacation request may be more specific: "let's take a vacation where we don't have to hike to the beach!" We were only gone two days, but we really feel like we've been away. And we've got the laundry to prove it!
We drove straight from Solomons to NIH for Clare's radiation treatment this morning. We're off to a big transplant team meeting at Children's today that will hopefully give us a BMT date. So, more news tomorrow.
Karen
Thursday, June 23, 2005 9:09 PM CDT
Another day, another 15 minutes of radiation for Clare. She and Phoebe played astronaut during today's treatment. Clare, in the mask and on the table, was our woman in the sky. Phoebe on the intercom, was mission control. They had a good time.
Thanks for checking in on us.
Karen
Wednesday, June 22, 2005 10:24 PM CDT
Phoebe: "Clare, it's like you're in Outer Space!"
Clare: "Really?"
Today's treatment was the real payoff for yesterday. Hopefully the rest of the sessions will be as uneventful as this one. It took us more time to get through the two security checkpoints and have our car swabbed for explosives (No kidding, happens each time we visit.), than it did for Clare to have her radiation therapy.
Actually, the checkpoints are going faster. We now have photo ID cards and car tags, and the security guards are starting to check in with Clare as we pass through, ("How old is that little girl back there? Well, you have a good day.") And while I knew that Karen loves all dogs, I'm starting to think the bomb sniffing dog has a special place in her heart ("Girls, look how smart it is!).
This time we brought Phoebe with us, which answered a lot of unasked questions, I think. She saw it all, the talking elevator ride to the basement, the big machine, the table that goes up and down, the mask, the lasers, and finally the video monitor where we watched Clare get her treatment.
Phoebe helped us with the intercom conversation, and decided that there was an out of this world quality to looking at her sister in video monitor right next to a computer screen with an x-ray of Clare's head, a radiation target, and a whole lot of numbers that kept changing. I guess she felt like she was part of ground control, which, when you think about it, she is.
With the treatment over, the girls agreed that Mom should drop Dad off at work, and then they could do something really fun. They had lunch out and then I think they went grocery shopping with Mom, because by the time I came home the kitchen was filled with the kinds of cereals we never have: Honey Nut Cheerios, Cinnamon Toast Crunch and Chocolate Frosted Sugar Bombs - and lots of empty cereal bowls.
Even though there was an hour of rain and thunder, the swim team didn't have to cancel tonight's meet. Phoebe got to have Mom watch her swim. I picked up Clare while the teams were waiting for the storm to break and we played Sorry. When Phoebe and Karen got back from the meet we had dessert and a TV party.
Everyone went to bed late. Don't tell Mrs. Shaw.
Benno
Tuesday, June 21, 2005 8:52 PM CDT
Take a deep breath. Now let it out. Big sigh.
Clare had her first radiation treatment today, with the machine in three different positions for about two minutes a piece. Of course this was after 50 minutes of positioning her along laser guides, with three technicians, while her head mask was bolted (it's actually big clips and screws) to the table. It's all very precise.
Fortunately, during the positioning Karen and I could be in the room a fair amount of the time. Once she was in position, a series of x-rays was taken to confirm how the radiation treatment would be targeted and while the x-rays were being reviewed we went in again. Karen read Magic Treehouse, and continued over the intercom while we watched the final positioning and actual treatment on a television monitor. Not much to see. Clare lay on the table. The red light next to the monitor blinked. An alarm beeped. And then the big giant door opened. Change the machine's position. Repeat.
As the session wore on, one of the technicians kept apologizing and explaining that they had to be *really* careful around her brain and spine. I kept saying, "And I want you to be careful too!", as I tried to imagine the parent who - thinking about their child behind the 5-inch door, with the enormous machine rotating around her - would say, "Don't worry about it! Let's be careless!"
Clare started to get uncomfortable after 45 minutes, but toughed it out when we told her that there was only 15 minutes left. Once she was free of the table things looked a lot better, although her chin was a little sore from the mask. She grabbed the first elevator and we we gone. Friendly faces were not far, as it turned out. Just before leaving the building we ran into Jean Betz and Hayley Biegel on their way in. Suddenly the big, new building we were standing in was ours, because we had seen our friends there.
A quick lunch at Chicken Out and Clare settled into a long game of Go Fish using giant novelty playing cards with Phoebe. Karen finally got a chance to get some shopping done. Joyce brought a pair of 20Qs from the Grinkers. My work checked in to make sure everything was okay. Phoebe and Karen went off to swim practice where more friends make sure we were all right. The yard crew recommended by Jason and Kathy quickly turned our expanse of creeping vines and dead rhododendrons - we had completely given up on it - into a neat, precise little yard. Dinner was in front of the TV while we finished watching Miyazaki's first film. All was well.
We've been told that radiation is - oddly - one of the easiest parts of the relapse treatment. And that seems to be true. It's just so invisible. And I did find myself looking twice at the summer evening fireflies as they flew by tonight.
Where's that glow coming from anyway?
Benno
Sunday, June 19, 2005 9:47 PM CDT
Clare is feeling much better this many days out from the steroids and the month of chemo just finished. Her counts from Friday's blood work show that her marrow is bouncing back nicely after this week's break. We'll find out tomorrow (Monday) what the schedule for her cranial and spinal radiation will be.
On Friday, we hung the origami cranes at the clinic, under the expert direction of Meredith McGuire, Alexandra and Caitlin. They look terrific, if I do say so myself, and we had fun doing it. Clare was thrilled at imagining how surprised Miss Beth and everyone who has appointments on Monday will be.
The best part of the weekend was the overnight visit from the Andrews on their way home to Ohio from their vacation. They braved I-95 to take us out to dinner on Saturday night. We LOVED seeing them. Phoebe and Clare adore their cousins Jamie and Isabel, and their Uncle Mark and Aunt Emily, and now will expect them just to drop in any old time. We ate at Rainforest Cafe (Long waits! Big flaming dessert! Loud animatronic animals!) at Clare's request. It was a tad bittersweet since the last time we were there (Jan 2004) we were celebrating the end of chemo, especially since we got seated at the same table!
But, you just can't read too much into these coincidences, can you? We continue to do what we have to do, and that's all there is to it.
Karen
Thursday, June 16, 2005 9:11 PM CDT
Clare is coming down fairly hard off the 28 days of steroids, and has been very achy and tired most of the last two days. Some protocols call for tapering off the prednisone, but the one she follows doesn't. We didn't remember her having any trouble coming off the dexamethasone in her first treatment, so we agreed to just quit the prednisone. Time to move on from all these steroids!
Clare has gained over 10 pounds, and you can really see it in her round, round face and belly. Her energy level flags pretty quickly, and her joints ache a lot. We've been talking a lot about what it means to have a transplant, but she's not very interested in looking at any of the books we've been given.
We had more of a social life in the last two days than we have in weeks: the end of the year bus stop ice cream party and a couple of friends over. Clare tired out fairly soon, but seemed to get it that we need to see people now because soon she won't be able to have visitors.
Tomorrow we go to the clinic for blood work, and to hang the origami cranes in the infusion room. Clare says she doesn't want any more "break weeks" but wants to just get going on treatment and get it done.
Maybe we'll get a more definite schedule after we get counts tomorrow. We'll all feel better when we have a plan.
Karen
Tuesday, June 14, 2005 8:24 AM CDT
UPDATE: Clare's ANC (measure of immunity) was only 409, so she will not be heading to NIH for radiation tomorrow. Evidently, the ANC must be at least 750, so we will be at the clinic on Friday so she can get her counts rechecked. — α—
Clare went to school today for the party! She lasted several hours, and was so glad to see her classmates! To all the 1st grade parents: I bet you're talking about steroids, weight gain and baldness tonight! If any questions come up that your kids would like to ask, please email them! We'll talk about anything!
Yesterday’s clinic visit went well, although not quick enough for the always hungry Clare. There was some confusion about what labs were needed for the all important Day 28 tests--the day they take measure of her remission, and search for the presence of any leukemia blasts in her marrow or central nervous system. But everything got figured out, and we were on our way to KFC by 11:00am.
The marrow and CNS fluid were clear! Her counts are low but not bottomed out. We think that the cranial and spinal radiation will commence tomorrow as planned, but will find out for sure today.
I have too many thank yous to even get started, but know that we love and depend on all of you. The meals from the meal list have saved us, and the many gifts and cards have cheered us. Clare’s Blue Angel soccer team, the Brownies and the Bannockburn First Grade in particular have showered her with good things that are much appreciated. Our friends from St. Patrick’s have been so generous, particularly with gifts for the kids and restaurant gift cards that will save Benno and I from certain heart disease via KFC.
One gift in particular I have to mention is the 1000 origami cranes given to us by the Bannockburn 4th grade. Dr. Leighton’s class began folding cranes earlier this year, and it became something of a mania with all three 4th grade classes. They hung a thousand cranes in Dr. Leighton’s classroom--it was a spectacular sight. In an extraordinary burst of generosity, they decided to donate the cranes to our family, to be hung in the infusion room at the Rockville Children’s Hospital Outpatient clinic where we spend so many hours. Quite a few were also delivered to our house yesterday by Meredith McGuire, Alexandra & Caitlin Schoen, Peg Jobst, Helen, William and Ellie Harris. They are so wonderful--they float and turn gently in any breeze. I can’t wait to see them at the clinic.
Thanks for checking in with us.
Karen
Saturday, June 11, 2005 8:46 PM CDT
Yesterday, Clare was measured and fitted with the mask she'll wear for spinal and cranial radiation in a marathon appointment at the National Institutes of Health. We spent a lot of time with several doctors and a nurse talking about possible side effects and how the whole procedure works. It was very sobering, and I have to admit that this really scares me. But the spinal fluid is a sanctuary site for leukemia cells, and they must be eradicated if Clare is to put this disease behind her forever.
So, she had a CT head scan yesterday. It meant a lot of time on the bed part of the machine while the technician carefully measured her various body parts, and made lovely blue marks down the center of her abdomen. These have to stay on until Wednesday, so bathing will be minimal, which pleased Clare a great deal. The radiation doc also asked her where she wanted to go to lunch, then solemnly told her he'd write a prescription for that restaurant so we'd have to take her--she really liked that too.
The mask is made from plastic mesh which they heat in a bath of warm water until it is flexible, then mold closely over her face and head while she is lying down. She can breathe and see through it, but they bolt it to the table so she cannot move her head. It fits so closely over her face it leaves a mesh pattern on her skin.
The procedure yesterday took a long time from the molding of the mask to the scan itself. Clare once again did wonderfully, and didn't say a word until about 2 minutes before the 40 minute procedure was over. Then she whimpered a bit that the back of her head hurt. There was a red mark there where her head fit into the plastic head rest, and you could tell it must have been painful. She's not in a hurry to get back into that mask, but we're due to go back on Wednesday if her spinal tap and bone marrow aspirate are clear on Monday.
Luckily, Nana and Grandpa Schmidt are in town, so Clare was very glad to get home to see them. They have really spoiled all of us while they've been here, and we will look forward to them coming back.
Thanks again for the many kind notes in the guest book. We feel the love!
Karen
Thursday, June 9, 2005 9:08 PM CDT
We've spent the last few days trying to get to that place where the phrase "bone marrow transplant" doesn't make us want to grab our children and run as fast as we can. It's been an interesting disconnect between Clare's team of doctors/nurse practitioner and us. As soon as the medical team got the word that Phoebe was a sibling bone marrow match, they began planning Clare's journey to transplant, right down to possible dates. We were much further behind, even as we were filled with relief that Phoebe was a match, because "bone marrow transplant" just is not an easy procedure to contemplate. The doctors considered the decision made, by virtue of Phoebe and Clare's HLA typing. It took us time to get to that point.
So we studied the information available to us. We spoke to a trusted doctor who is both an oncologist and and a doctor who has treated Clare for every childhood illness since her birth almost 7 years ago. Our main oncologist met with the head of the Children's Hematology/Oncology department (who also heads the Children's Oncology Group, a nationwide collection of institutions running clinical trials looking for the cure for childhood cancer) about Clare's case.
We prayed, and asked for the prayers of those around us.
Every research paper and every person consulted brought us to the same conclusion: the treatment for Clare's bone marrow and central nervous system relapse for this type of leukemia (ALL) is for her to have a bone marrow transplant with Phoebe as a matched sibling donor.
Our heads are spinning, and the inexorable march toward what was the unthinkable has begun. Our first consultation with the radiation oncology department at the National Institutes of Health is tomorrow (Friday) morning.
Here we go. Keep praying for us.
Karen and Benno
Thursday, June 9, 2005 0:16 AM CDT
Wednesday was another nice quiet day. Something of a counterpoint to Tuesday. After a good night's sleep, Clare woke up early and hustled Karen out of bed to make cinnamon rolls. Five minutes later - okay, maybe more, maybe I fell back asleep - Clare was in our room to announce, "Dad! Mom made cinnamon rolls and there are only two left!"
As we were getting ready to head out, Phoebe and I exchanged a look as if to say, "Let's just stay home with Mom and Clare today." But we've agreed that our job is to keep things normal. I go to work. She goes to school. It was field day today, and just before the bus came Phoebe's teammates dropped off her team's shirt (Thanks Linn! Thanks Willis!). When I got back from work I noticed that Phoebe is starting to get tan, despite the vat of sunscreen we dip her in every morning. Is it field day? Is it swim team? Time is going by.
So much of Clare's treatment is familiar. If you like the prednisone (Noun, Medicine, a synthetic drug similar to cortisone, used to relieve rheumatic and allergic conditions and to treat leukemia.) you would have loved the dexamethasone (Noun, Medicine, a synthetic drug of the corticosteroid type, used esp. as an anti-inflammatory agent.) jokes. As she brushed her teeth tonight, Clare looked in the mirror and said, "Oh great. I've got the giant head again." Meaning that her cheeks are getting big and round, like they did on the dex.
And then so much is unfamiliar, like the BMT. A lot to think about.
As a special treat the girls got to pick out three cartoons to watch before bed. Immediately they agreed on three from a disc of Wile E. Coyote (Eatibus Anythingus) and the Roadrunner (Hot-Roddicus Supersonicus) cartoons. Then they proceed to scream with laughter. There's something about watching an ill-concieved plan unfold. Clare: "Oh this is going to be good!". Phoebe: "That will never work! Roadrunners can't read!".
After the girls were in bed I caught up with Matt and Dasha, friends from BU that I haven't seen in three or four years. Out of the blue a card came from them today, asking about how Clare was doing. Dasha had been wondering how we were and dropped "Schmidt Melchar" into Google. That took her to a page on our church's website that talked about Clare's relapse. It turns out that Matt's step sister is a leukemia survivor, having gone through a bone marrow transplant last year. And she has a caringbridge page. So there you go.
Benno
Tuesday, June 7, 2005 9:23 PM CDT
Most of the day at the clinic today as Clare's meds took longer to arrive than expected. Instead of being NPO (can't eat) until 9:00am, she had to hold out until 12:30pm when the meds and the red blood cells (more later) arrived. Better than being NPO at the hospital for 24 hours. It's all relative.
The LP and PEG shots went beautifully, and as soon as the anesthesia wore off Clare, between bites of a peanut butter sandwich, sent me across the parking lot to KFC ("Dad get *two* large popcorn chickens, and *two* biscuits, *and* macaroni.) Darlene and Dave, I'm thinking about getting stock in KFC. Are you with me?
Speaking of Melkonians, coming out of the procedure room Dave had been there with a Candlelighters book on Bone Marrow Transplants and gifts for Phoebe and Clare. And on the bulletin board just above the chair where Clare was sitting was a picture of Christopher and Samantha. We have friends who have been down this road before us. And now are watching out for us as we come along. It's indescribable.
Karen's keen observation yesterday ("I can guess that hemoglobin count in two looks at her skin!") meant that Clare followed her procedure with a transfusion. Pinked her right up. So we made it out of the clinic just after 3:00pm, stopped at the Shell-Station-Of-Good-Counts and made it home in time to get Phoebe off the bus.
Didn't get much work done today, what with not actually being there and all, but checking late this afternoon, things were quiet and routine. Here's what went wrong in my department right after Clare was diagnosed last month: nothing.
Like everyone else did when they found out about Clare, all of my coworkers asked how they could help. And then they made sure that work was the last thing I worried about. Took it right off the table. And every day they ask me again, "What can we do to help?"
On the neighborhood front, it seems that chicken pox is making its way through the second grade. Many phone calls tonight. Just wanting to let us know. Years ago we would have welcomed it. Have them all eat out of the same popcorn bowl. Get it over with. But now it's different. Could more people be looking out for Clare? And for us? I don't see how.
Benno
Monday, June 6, 2005 8:58 PM CDT
Clare did make a brief appearance at Field Day today, but we only lasted about 10 minutes as it was SO hot. Clare was very shy of approaching her classmates, mostly because she is uneasy about her appearance. Most of her hair is gone, but kind of a very thin halo remains. She also has the round chubby face of a kid taking 40 mg of steroids per day.
I really wanted Clare to make it to Field Day, however briefly, as I don’t think there will be many other chances for her to see her classmates before summer break. So she put on a pink bandana and off we went. We only got as far as the corner of the building before she balked, but luckily her teacher, Mrs. Shaw, was right there. What is it about teaching for 36 years that makes you able to read a kid’s mind? Mrs. Shaw picked up on the fact that Clare was worried about being overwhelmed with first-graders, and saved the situation. We found her class at the ball-rolling game and had a few minutes of waves and big grins from a distance. It was perfect. As we drove away, Clare said “I really needed that.” I’m so glad that Mrs. Shaw could make it work.
We then drove straight to the clinic for a CBC (complete blood count). Clare has been extraordinarily pale and tired in the last day or two. Since tomorrow (Tuesday) is a big day of chemo again, I thought maybe we should have counts early so if a blood transfusion was needed it could be arranged during our already scheduled clinic visit. Well, this time I was right, and Clare needs red blood as her hemoglobin is at 6.4--yikes! Normal Hgb is around 12.0. They transfuse when you get to 7.0 or lower, I think. Her ANC (a measure of her immunity) is 49--normal is 1000 or higher. So all classmates and other visitors will have to remain at a distance for awhile. Any fever over 101.5 would mean an automatic hospital admittance, so we’re praying to avoid that number on the thermometer.
Other important news: Phoebe is a safety patrol, and already in training as of today. I got a big lump in my throat watching her stand at attention at the bottom of the stairs of the bus this afternoon. It really was only yesterday that she was in Kindergarten and getting on that bus for the first time.
So more news tomorrow after clinic day.
Huge congratulations to my friends who scheduled, ran, and donated blood at a stellar Cabin John Citizens Association Blood Drive yesterday. This drive brought in 52 much needed pints for the Red Cross. And speaking as someone whose daughter will be receiving a much needed pint of red blood tomorrow, thank you, thank you, thank you.
Karen
Friday, June 3, 2005 5:17 PM CDT
We found out today that we won the marrow lottery. Phoebe is a match for Clare. There was only a 25% chance, but we made it.
This opens our horizon considerably.
Thanks for your thoughts and prayers.
Karen and Benno, Phoebe and Clare
Thursday, June 2, 2005 11:29 AM CDT
We had word yesterday on Clare’s MRI results: all clear. The doctor said she could see that the marrow is being treated by chemo, but there were no masses which is good news, indeed. A leukemic mass is actual a very rare occurrence, but Clare’s intense back pain several weeks before relapse diagnosis (she was inpatient severely constipated at the end of April) raised some questions the doctors wanted answered, hence the MRI.
We were assured In April by both the gastro-intestinal and hem/onc docs that the constipation issue had no oncology connection. So, I guess we’re calling it a coincidence that Clare was hospitalized with severe back pain/bloated abdomen the last week of April, then relapses the 2nd week of May. All the blood work done in April showed no cancer--this is a devious disease.
Clare continues to feel headachy and tired. This is a lot of chemo for a little body to process.
Clare’s counts are low enough that she won’t be in school for the rest of this week. Various chicken pox outbreaks may make it unlikely that she attends any more school this year. We hope she can make a cameo appearance at Field Day, and maybe at the last day of school.
Today’s menu so far: 2 bowls of cheerios w/milk, two Eggo waffles made into a sandwich with peanut butter, a bowl of cantaloupe, part of a banana muffin, two salmon patties, two pieces of toasted cinnamon bread, a bowl of wheat thin crackers, and a piece of corn on the cob. This was all consumed before noon.
Many thanks and a rousing “good luck” to Jim Zammit, father to Brandon and husband of Cindy, as he leaves for the 100 mile bike race in Lake Tahoe to raise money for the Leukemia and Lymphoma Society. Brandon is a fellow traveler at the Shady Grove clinic, and finishes up his treatment for leukemia later this year. Cindy and her dad just stopped by to have Clare sign Jim’s bike jersey.
I’m glad that so many people are able to keep up with us through this site. I must say that we find it very cathartic to write. Remember that no news is good news, though. Sometimes we’re just too busy making salmon patties to get to the computer.
Karen
Tuesday, May 31, 2005 12:29 AM CDT
We’re just back from this week’s visit to the clinic. Clare once again received IV vincristine and had a spinal tap where a triple intrathecal (IT) was administered: ARA-C, methotrexate and hydrocortisone. She also had two PEG shots administered, one in each thigh. All of this is done under conscious sedation, so she has no memory of the actual procedures.
Our post-clinic routine remains the same. We eat lunch (Clare’s choice so KFC, unfortunately), then Benno goes back to work and we relax on the couch with cartoons and possibly a nap. Clare’s legs ache from the shots, and she feels wiped out from all the chemo. I also think she has a lot of letdown after the negative anticipation of the procedures.
Clare is on day 14 of the 28 days of steroids. She takes 40 milligrams per day . The steroids are effective cancer fighters, but make life crazy for Clare. She continues to obsess about food, and has put on weight. Her face has taken on the very distinctive round shape you see on kids in the induction phase of chemo. All the steroids make her feel achy and flu-like most of the time too. But, it fights the bad cells! All power to the steroid!
As expected, Clare’s hair is falling out, probably due to the ARA-C. This is the third time since she was originally diagnosed in November 2001. There are worse things, but nothing really says “cancer” like the bald head. If it keeps coming out the way it has in the last two days, she should be slick headed by the end of the week.
Clare is understandably unhappy about this turn of events, but fairly resigned to it. She wishes that another medicine could be given that didn’t make your hair fall out. But she did observe that no hair does cut down on the shampooing. Her father had to agree! Target had $1 hats--we bought one in every color, then got two more as a present from the Duffy’s--THANKS!
We haven’t gotten the HLA typing back on Clare or the rest of us. We’re getting impatient because we feel like we need to make a plan for the rest of treatment. But, it takes weeks to get the tests back. The wait is wearing on us a bit, but overall we’re doing well.
Our visit from Aunt Phoebe, the belle of Colorado Springs, was a rousing success, especially if you happen to be one of Aunt Phoebe’s nieces. We didn’t actually hang on the bumper of her rental car as she pulled away, but close to it. She cooked dozens of chicken legs (Clare’s food obsession this week) and made a vat of terrific pasta salad and was just the most fun ever. We miss her!
Many, many thanks to Brooke and Larry Myers for the IPODs and music. We are all thrilled. Clare listened to the Beach Boys before her spinal tap this morning!
Thanks for checking in--we really appreciate it.
Saturday, May 28, 2005 9:12 PM CDT
Day of endless snacks, as the steroids continue to do their work. A wonderful bag of fresh muffins were left at our door this morning (Thanks Wendy!), and now they're all gone.
Phoebe Ruth had her first swim team practice this morning and she was so excited to see her coaches and teammates again. A welcome routine in all of this craziness. And the pool looked great. Many thanks to all the board members who got stuck with all my unfinished tasks.
Karen and I had the *whole* afternoon off and actually managed to have a lunch date thanks to Aunt Phoebe. We also had a chance to get some shopping done at Target, the Container Store, and all those other Rockville pike type places.
After dinner and a movie with pizza and Monsters, Inc. Full and happy, Clare, with four slices of pizza in her, went to bed a little lonely - Phoebe Ruth is at a slumber party. And Aunt Phoebe can tell you more about the afternoon.
Benno.
Aunt Phoebe's $0.02
Clare, Phoebe Ruth and I had a very pleasant afternoon! First we played with our respective toys (GameBoys or knitting). Clare beat the pants off me at Trouble. We had lunch (Nathan's hotdogs), and then we went to twirly-wirly land [the playground] fully provisioned with the major food groups: potato chips, water, and Goldfish. There we blew bubbles and did some climbing and pacing and took pictures. On the way we saw men playing soccer/volleyball: a volleyball net, a soccer ball, and lots of headers! We kind of ran out of energy at the playground, and it looked like rain, so we came home just as it was starting to sprinkle.
Phoebe went to her slumber party, and Clare and I played Dog Dice, it's like Bingo. (You don't even have to be able to read!) I won. So I can salvage some self-esteem; I have been thoroughly trounced by Clare at everything else: Trouble, Scrabble Junior, and thumb wrestling ("One, two, three, four/I declare a thumb war./Five, six, seven, eight/you will lose and I'll be great.") Clare has also done twenty consecutive games of Pac-Man three times in two days. (The kid catches on quickly.)
Then we set up a glow-in-the-dark marble run, but not without reading aloud the instructions on the box in both French and Italian. ("OK, Aunt Phoebe, you can stop now!!") This was interspersed with some Sponge Bob viewing on the couch (selected episodes) and several more cold chicken drumsticks. (Thank God I got a giant picnic family pack.) By that time Mom and Dad were home with a new car seat with two cup holders! We topped the afternoon off with some cheese tortellini.
So energy levels vary rather dramatically during the course of the day, and salty snacks are the preferred food group, but spirits are high, especially because Aunt Phoebe is so beatable at games! (And I'm trying to win!)
Phoebe
Friday, May 27, 2005 8:23 PM CDT
Clare had her first MRI today, and when asked if she’d be back to visit the MRI tech, she replied with an emphatic “no, thank you!” It was louder and took longer than we had imagined, but now we know. Clare was very still and very patient. The ear plugs handed to both of us as we entered the room helped. The tech congratulated her on being so still. Clare is brave. Mom was more shook up standing there for 45 minutes holding her feet while she was in the tube of the machine.
We won’t have results until next week.
Other big news: Clare finally lost the tooth that’s been hanging by a thread. I’m not sure she’ll be eating corn on the cob this summer as that makes three from the top row. Note to Mrs. Gugerty: your tooth-pulling services will not be needed this time.
Even more life-changing news: Aunt Phoebe bought Game Boys for the girls. Our waiting room wait times are never going to be the same.
Karen
Thursday, May 26, 2005 8:36 PM CDT
Clare had a triumphant return to school on Wednesday, which depleted her energy reserves for today. She had a great day seeing her friends, and checking in with the staff--I think she talked to every adult in the building. This morning she got dressed and to the bus stop, but when that bus pulled up, she just couldn’t do it. We weren’t really expecting much in the way of school attendance, so we’re playing it by ear. The oncologists really stress maintaining normal activities such as school and sports as possible, but there is certainly something to be said for knowing your limits.
Also, today marks 11 days of Clare’s 28 days of steroids, specifically prednisone. This is proven cancer fighting medicine, but it is so hard on the kids. Clare gets very hungry for very specific things, has a few bites, then moves on to the next item she needs right away. And most items need to be very salty. Today’s cravings: cheese tortellini, salmon patties, and potato chips. She can’t help how obsessive she is about food right now. At least the emotional swings haven’t been too bad.
Most exciting news about today is that Aunt Phoebe has arrived from Colorado. The girls ran outside to greet her they were so excited to see her. I think they have about talked her ear off. They are scheduling every bit of her time while she is here, and may not let her leave. We are so glad to have her visit.
Thanks for checking in--remember that no news is probably good news for us right now. Tomorrow brings an MRI for Clare. She’s never had one, so we’ll see how it goes.
Karen
Tuesday, May 24, 2005 10:13 PM CDT
The whole family went to the Shady Grove clinic so Phoebe, Benno and I could have blood draws for typing. We won't get results back for a week or two. It was a little weird to sit in the little lab room, and even weirder to see Phoebe in the chair where Clare has gotten so many draws in the past.
Phoebe did great! This was the first blood draw for her since she was a baby. She took a deep breath, and watched that little needle with the wings go into her arm, just like Clare always does. Benno and I look away . . . not so tough as these kids.
We also did the first dressing change on Clare's broviac--the central line cathether where all her blood draws come out from now, and all the chemo goes in. Not her favorite activity with the bandage that must come off, and the stinging alcohol on the sensitive skin. But we got it done, and remembered some of our old tricks.
Thanks for all the nice guestbook posts--really fun for us to read, and very encouraging.
Karen
Monday, May 23, 2005 10:13 PM CDT
Clare had a rough day at the hospital clinic today, but we have good news which makes it a bit easier to bear. She had a spinal tap, and a bone marrow aspiration which are done under conscious sedation (versed and fentanyl for those interested in anesthesia, and the two of you reading who are actually anesthesiologists). She actually got a little more sedation than she has in the past because she was very agitated going into the procedure, but it had been a long morning with no food and a lot of boring talk among parents and doctors.
The good news is that the number of leukemia blasts in the bone marrow has dropped dramatically in the week of chemo Clare has received, enough so that the doc declared her in remission. This is excellent news as all treatment decisions start with the phrase "when she reaches remission we can do this . . ." so such a quick turnaround makes us very happy. Reaching remission this quickly doesn't affect the treatment type or length for the next 3 weeks. She is still getting the big guns, because as we have learned the hard way--leukemia may disappear, but it isn't gone. Other good news is the number of cells in the spinal fluid has dropped from 215 to 16.
So, Clare is on her way, and we're relieved beyond measure.
We also had a very informative and sobering meeting with one of the transplant doctors. We're learning the options for what will be the ultimate treatment for this disease. Some of it is very hard to hear, but generally it makes us feel that all is possible. Those who know us, know that we are information junkies. We want the papers, the websites, the books, the studies and the opinions, and we want all of it laid out for us. We got that in good measure today.
Many thanks to the Clare's Crew folks who met at Kathleen's house last night. I just read the outline of what was organized, and I'm overwhelmed. We are so grateful to all of you. Thanks to the Gudes for all the lawn work, and to Lisa & Bob Norris for the fabulous dinner and getting Phoebe to the bus this morning. And to Lisan for the groceries and the Teplitzs for the movies which are going to be a big hit in the coming weeks. And to the Harris kids for lending the story tapes--we haven't gotten to Horrid Harry yet, but we'll post a review when we do. The thanking could go on all night, so don't be offended if I've left you off the list. We are so thankful for our friends, family and neighbors.
Sunday, May 22, 2005 9:22 PM CDT
Spent today locked in close as a family, gearing up for the week ahead, and specifically a very big day at the clinic downtown tomorrow. Clare is feeling very good today, no nausea and not much headache. Phoebe worked very hard on her application to be a safety patrol next year in the fifth grade.
We went to church where we were inundated with blessings, prayers and good wishes. I've often heard of people being held up in prayer, but we are practically airborne at St. Patrick's. Thanks to all for your prayers and love. We really need both.
We rounded out the day with a trip to Build a Bear (Benno's first bear-building experience!), and lunch at the mall. I hate the mall and never take them, so this was a huge treat for the girls. We've got some times ahead where Clare's counts will not allow for such public appearances, so we thought we'd best get out as a family while we can.
More specifics tomorrow about Clare's treatment for those who follow such things. To answer some questions from the ALL-Kids list (listserv of leukemia parents), she is following the induction phase from AALL01P2 even though she is not on study. Thanks for any info on other relapse protocols as we're still in the info-gathering stage.
Karen
Saturday, May 21, 2005 9:08 PM CDT
Another wonderfully quite, and reasonably uneventful day. Tried to see how many little things we could knock off while we have the time. Finish "Kiki's Delivery Service" with the girls, pick up paper towel holders, collect pots from clay class, get haircuts, update operating systems, clean desks. Those kinds of things.
Clare became nauseous late in the morning and got sick. Was it the Nystatin? The apple slices? Too much to eat? Too little to eat? Sometimes you don't get to know. Karen almost made it to the hair cutter, and then had to turn around. After a couch break, and a Zofran (see yesterday's journal entry) Clare got back in the van and had her hair trimmed. There was a temptation to have her get her haircut really short, but we let her decide. It's nothing she doesn't know.
Spent the afternoon turning the box from yesterday's medical supply delivery into a car complete with windshield, wipers, steering wheel and gas and brake petals, while Phoebe had a much needed trip to the aquatic center. Energy level aside, Clare has to wait 10 days after surgery before she can get in the (chlorinated only) water.
Phoebe came back happily exhausted and we unmade some evening plans so we could all watch TV together ("We're gonna have a TV party tonight! All right!") and many episodes of Sponge Bob later it was time for bed.
Karen's turn for Heparin tonight and after she was done she remembered how to grab all your trash in one hand while you have your gloves on and then pull off your glove so the trash is wrapped up. There are all these little tricks to remember. Double lumens, though, are a new thing. Did you just do the right one or the left one? The red one or the blue one?
While I was picking up all the little pots the girls and I made in our clay class workshop, I thanked our instructor for holding onto them for so long. We were weeks late in picking them up. And I mentioned that Clare had been sick, which it why we missed last weekend's pickup time.
I suppose I could have gotten into the details, but to be honest, it's hard. Karen and I call it dropping the bomb on people. So this is my roundabout way of thanking everyone who did this for us. Passing this news along is *hard*, but it helps us so much when we don't have to drop the bomb on people (like my poor dentist's office), so thank you.
Hoping for another quiet day tomorrow.
Friday, May 20, 2005 9:07 PM CDT
Today has been a quiet, restful day at home, and never will I take that for granted again. Clare is feeling much better, although we have kept the tylenol with codeine going as her head aches miserably without it. She has not had further leg pain, and the nausea seems to have passed as well. She certainly felt well enough to beat me at Chutes & Ladders, Guess Who, Trouble and the Oreo Cookie Matching Game, which unfortunately only involves plastic cookies, not the real ones. Phoebe went to school, and to Girl Scouts--thanks to Troop 432 for the wonderful card. We could pretend to be normal today, and it was so welcome.
Benno and I spent the day getting our routines back in place. The central line supplies were delivered by the home health company, and it was Art, the same driver from when Clare had the central line from Dec. 2001 to Jan. 2004. He brought the box inside and said, “Well, here we are again,” and I just wanted to cry. Art doesn’t really seem like the kind of guy who could handle the crazy cancer mom thing, so I didn’t. Art is the kind of guy who was never late with a delivery to us in two years, and that was in some crappy weather and in almost the worst traffic in the country. We love Art, even if he never says much.
I got a fistful of prescriptions filled at the CVS last night: prednisone, Peridex mouth wash, Nystatin, and the anti-nausea drug Zofran, which is worth many times its weight in gold. It also costs as much as gold, practically, but I’m sure our friends at GlaxoSmithKline are spending those profits wisely. You know that life has changed when the pharmacist (the white-haired, kindly-looking, older man for all you locals) comes to counter to pat your hand when you pick up your prescriptions.
I shouldn’t get started thanking people, because it will take all night, but thanks to the many of you who have sent treats to the girls, and given us good things to eat. We looked out the window at all the many pinwheels (signed by folks from the neighborhood! How cool is that? Maria Whiteaker is a genius!) as they got rained on today, and it really made all of us smile. Special thanks to Brownie Troop 1801, the Brownie moms, the Blue Angels soccer team, all those teachers and kids from Bannockburn Elementary, Rachel Hensler for bringing me food at the hospital and many others I’m too fried to remember right now for the cards and gifts. Thanks to Deb Duffy for planting our tomatoes and herbs, and to Bob Norris for mowing the lawn.
I’m so grateful to Burr Gray, Judy Brookes, Lisan Martin and Ruth Rabner for scheduling the blood drive since I can’t--it means so much to me and even more so now.
Thanks to McGuire/Schoens, the Blacks, and Lisa Norris for scheduling and feeding Phoebe while we were at the hospital. It was such a relief to know she was covered while we were away.
And all the love and appreciation in the world to Kathleen Black and Kathy Butler for organizing the troops.
Friday, May 20, 2005 7:13 AM CDT
Clare came home last night. This morning the yard was filled with pinwheels. We really need to start a photo gallery.
Thursday, May 19, 2005 8:52 PM CDT
Today we learned about beads. This time around there are beads. At the hospital Clare was given a necklace with beads that spelled out her first name, and a silver bear for Children's National Medical Center.
For each significant event in her treatment - BMAs, LPs, the three PEG shots she had last night, ER visits, chemo, etc. - she gets a different bead. Starting treatment, with all the initial preparations, gets you almost half of them. It's a record of the time that we didn't have before.
Small improvements today. Little negotiations. Start with crackers, end up eating a bagel. The morning's little sips of water turn into (finally) taking a full dose of MiraLax. If you want to see the puppet show in the playroom, then you'll need to have a quick wash and change your pajamas.
Today was a day of no fevers, reasonable food and liquid intake, and good blood counts. Today was the day Clare went off her IV fluids and started taking oral pain meds. Today was the day we got to take Clare home.
After waiting for the last CBC to come back, and reviewing all the meds. After a few wrong turns coming out of the hospital and a trip across the top of DC during rush hour. Clare is home.
The new/old routines have started. A bath without getting the central line wet. A trip to CVS to get all the prescriptions filled. Trouble falling asleep. Clare is home.
Wednesday, May 18, 2005 10:36 PM CDT
Clare had a rough day feeling tired and sick. Her leg pain seems to have resolved, but she is suffering from headaches and vomiting. If the nausea can be controlled, her counts allow, the moon lines up with the stars, and the docs say so, we hope to have her home from the hospital tomorrow (Thursday). We’ve learned not to count on those predictions until they’ve had you sign the discharge papers, but here’s hoping.
The bad news to report is that cancer cells were found in Clare’s spinal fluid at the spinal tap performed on Tuesday. This is called central nervous system (CNS) relapse and buys Clare a ticket to some pretty rough and tough chemotherapy that we had hoped she could avoid.
Clare did not have CNS involvement at her first diagnosis, so this was a blow. Our good doctor tells us we need to look at it in a positive light. By identifying the CNS involvement at the beginning of treatment, we can act aggressively to fight the cancer which is much better than getting through some portion of treatment only to then have a CNS relapse. We’re taking those words to heart.
On a positive front, the CT head scan and echocardiogram all seem normal. Clare has done so well with all these tests. Nothing seems to faze her, even when she is really feeling sick.
Phoebe continues to be a top big sister by taking messages of good cheer from the folks at school to Clare, arranging little gifts for her, and snuggling right in to watch Sponge Bob on visits to the hospital. She has handled the massive disruption in our home life with great ease, but notes that “Clare really needs to come home now.”
What can I say about the huge outpouring of love and support from the Cabin Johners, the Bannockburn Elementary School community, the folks at St. Patrick’s, our fellow cancer parents from the on-line email lists and all our family and far flung friends? Your thoughts and prayers are keeping us together. We will never, never forget both how difficult a time this has been, and how wonderful you have been to us.
Karen
Tuesday, May 17, 2005 10:10 PM CDT
Executive Summary
Clare is doing well after Broviac surgery yesterday. The induction phase of her chemotherapy starts tonight. As the chemo takes hold, the pain in her legs should be eliminated as should her need for pain medication, currently morphine via a PCA pump. The goal of induction is to bring her to remission.
We continue to be sustained by the outpouring of support that our doctors, nurses, family, friends, neighbors, coworkers, and fellow travelers are giving us. Just look at Clare's guestbook if you want to see what I mean.
If all goes well - no fever, no neutropenia - Clare will come home at the end of the week.
Benno
Long Incoherent Version
We've just returned from our evening visit to the hospital, where Clare and Phoebe enjoyed a smorgasbord of fish nuggets, Captain Crunch, watermelon, Ritz Dinosaur crackers, lemonade and orange peanut butter crackers ("Dad, do you think these will turn me orange?").
All this while watching an old, familiar episode of Sponge Bob which, for some reason, was mesmerizing. In a bed that goes up and down whenever you want it to. And I'm betting that after we left, Clare got into the piece of leftover pound cake that we hoarded from some meal during the last three days. Heaven.
This was a big change. When I left the hospital this afternoon to pick up Phoebe and bring her back for the visit, Clare hadn't eaten in almost two days.
For some reason - the doctors are still looking into this - Clare had spent the better part of this morning throwing up. Last night when we got back from the surgery around 8:00 PM she wasn't hungry. Yesterday afternoon was the surgery (very quick and uneventful), with a waiting period before and after (very long and uneventful). Yesterday morning she was NPO for the surgery starting at 12:00 AM. Which takes us back to 6:00 PM Sunday night when she finished her dinner and turned down any and all suggestions to have a snack before she couldn't eat. So 6:00 PM on Sunday to 4:00 PM on Tuesday.
Fortunately, she was on the PCA (http://kidshealth.org/parent/system/medicine/pca_pain.html) all this time and that seems to have taken the edge off things, although it may also have contributed to the nausea. Clare has been on the PCA since Saturday morning when her regular doctor prescribed it. And it has done wonders for her leg pane. Before that she had been getting a dose of morphine every 2 hours and you could really see the ups and downs. The last 20 minutes before the dose were bad.
Along with the PCA, her Broviac (double lumen this time) has also helped reduce the pain. She no longer has a peripheral IV in her hand to deliver her meds. And blood draws come out of the central line, not her arm. This also reduces the number of sticky band-aids and tape on her arms. Somehow the little mundane pains can add up to significantly bad experiences.
Many cards and letters were brought to the hospital room today which is such an important distraction. When she doesn't feel well, Clare asks for TV breaks, which leaves the empty wall, or the Three-Mile-Island-like cooling plant outside the window to stare at. Except now the wall's not so empty. Just don't ask where that roll of hospital tape went.
Anyway, that's all the important stuff I can think of off the top of my head. I don't think anyone wants to hear my tirades about hospital signage, or medical device user interfaces, or why I can't link a CSS file to this page. Karen's got the notebook at the hospital, so I can check later. I'm sure I'm forgetting important things, except one:
Clare also doesn't like visitors when she sick. We bullied her into saying hello to Paula, the Assistant Rector at our church, came by (a visit that Karen and I were in great need of) so Paula can tell you. And when we've asked Clare who else she'd like to see she says, "Nobody except Phoebe." Or as she said to me at the height of her nausea this morning, " Do you think Phoebe could come and play her clarinet? That sound would make me feel better. Like being at home."
Nausea. Today you're gonna be so sick so sick.
Monday, May 16, 2005 6:35 AM CDT
We found out on Friday that Clare has relapsed, meaning that the leukemia has returned. I took Clare to Children's Hospital in the wee hours of Thursday, May 12 with severe pain in her upper leg. Her original bloodwork didn't show any leukemia cells, but a bone marrow aspiration was performed Friday morning to search for a reason for her extreme pain. Unfortunately, the results of that BMA showed that leukemia cells were present in the marrow. Blood work done Saturday night showed that Clare is in full relapse.
Clare was 16 months out of treatment for the original diagnosis of leukemia (specifically ALL, acute lymphoblastic leukemia), and her relapse has come as a complete, shocking surprise to us and to her doctors. Clare had successful surgery today to place a central line catheter and another BMA and spinal tap to complete the round of tests needed before treatment begins. Clare will begin an intensive round of chemotherapy to achieve remission once again. A more long term treatment plan will be put in place after remission is achieved.
While we as a family are suffering with the return of this horrible disease, we are also confident that what Clare has done before, Clare will do again! She is tougher than anything and while sad about having to do this again (especially the central line) she has rallied considerably in the last day or two.
What else is there to say other than here we go again? We hope to be home from the hospital by mid-week, but Clare's counts will probably be too low to allow for visitors. Thanks for all your support and offers to help. We will be turning to you again and again in the coming months.
Karen, Benno, Phoebe and Clare
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