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Monday, August 29, 2011 4:49 PM CDT
First Day of School...
Obviously it's been a while since I have updated this site and that is a good thing. It means I'm not really thinking about this shit and life becomes normal (for us anyway) again. Each day Reagen gets further away from treatment the more invincible we all feel. It's a calm that let's us shake off things like earthquakes and hurricanes like water off a duck.
Our summer has been filled with friends and fun. A lot of time at summer camp for Reagen during the week and a lot of time in Avalon to rest on the weekends, depending on your definition of rest. We are grateful for our time and health and appreciate the good life we have right now. It is a far different feeling then the stress of treatment and the worry that went along with every little thing surrounding Reagen during that time.
This first day of school was probably the most under-hyped we have ever experienced. It was like "okay wake up - ok Dad, can you hand me clean underwear from my top drawer?" Then she got on the bus, further back than ever because she is in 5th grade. That was it, no tears (from anyone) and off we all go to do whatever it is we do all day. Last year if you remember our hero was confined to a room in Boston Children's watching a video feed of the assembly she so badly wanted to attend. There were also a lot of tears everywhere if I remember correctly.
Reagen goes to the hospital on Thursday to have her monthly check-up. It's a little stressful, but not too bad. Waiting for blood work to come back is worse now than the first time because we understand the risks more. We were too stupid to be scared the first time. I like stupid, and wish we still were. Reagen's numbers are recovering and she is regaining her strength and mobility, but we expect it to take a little more time. Overall she really looks healthy and has lot's of energy and is happy.
We really couldn't ask for more right now. This time seemed so far away and unattainable before and now that it's here it just feels right.
Peace
Tuesday, July 12, 2011 10:09 PM CDT
Happy 10th Birthday Reagen!!!
Wow, just wow. This little girl is hitting double digits. We are so happy for her and she is really excited about her birthday. She has been singing about it for days.
We just finished a great week of vacation and had a blast in Avalon. Reagen really thrives down there. I won't bore you with a list of highlights, but she did amazing at the waterpark (she is almost fearless), saw tons of fireworks, saw a lot of friends, and logged major beach time in the waves and sand.
Of course Reagen also had her first off-treatment fever while down there too. It's way more traumatic than a fever should be, but we got through. Luckily it was over after one dose of tylenol and labs checked today confirmed all is good in her blood. I won't lie we were scared, but we knew we would be and we each did what we had to do.
So we choose to move forward with all of you behind us helping. Reagen is 10 and she is happy, everything else doesn't matter so much today.
Happy Birthday Bear,
We Love You!
Tuesday, June 28, 2011 9:02 AM CDT
So Far So Very Good...
I have posted many sad and painful moments for Reagen on this blog but I am now happy to report how wonderful she is doing. She is summer camp crazy during the week and wave wonder on the weekends down the shore. We know that it will take a while for her to regain muscle strength and stamina as well as loose some of the joint pain from the steroids, but she is on her way. The difference in everything she does and how she feels and acts is dramatic from just a month or so ago. I can't imagine how she must have felt these last two plus years for the change to be so drastic.
Reagen's counts are checked every two weeks and she receives and hour long I.V. to prevent her from getting a very specific and nasty form of pneumonia. It is not horrible, but they have to pre-med her with benadryl and she is zonked for the rest of the day. We could all do without the hospital visits and reminders and the interruption to our schedules, but it also gives us peace of mind having her checked out and confirming that we are slowly and gently waking from this nightmare. Her counts are rebounding to almost normal now and her energy level is extremely high. Not hyper but she can keep up with the best of them. She sleeps great at night and wakes up with a smile every morning.
We had an end of summer goal to walk into town in Avalon from our house to get ice cream. It's pretty far probably close to a mile and I much rather do it on my bike, but guess who did it on Friday? We go there and we couldn't believe she walked the entire way without anyone carrying her. This was also after a full day of camp and about eight at night. She made it back too with only a 2 or 3 block shoulder ride from Dad. I think I wanted to see if I could still carry her more than she really needed the help. Sadly I don't see too many more of the shoulder rides in either of our futures.
I guess it's time to get on with it.
Friday, May 27, 2011 11:14 AM CDT
Re-set...
Reagen is officially off treatment tomorrow! She has one last set of meds to take (a 9 pill dose) and then no more chemo.
Our plans for celebration are modest. Hang down the beach, chill out on the deck and watch Reagen kick off her summer. We have a couple little things planned but nothing we have to do or can't do. I think just experience the stillness of the moment and start to re build our memories with fun and normal life experiences instead of hospitals, chemo and routines that are far from routine.
When having a disagreement with Reagen over something stupid sometimes we do a "re-set". That means everything is forgotten and we just move forward. Well now it is time for a huge re-set. In this case it's not over something stupid, but we just want to forget it, at least the bad parts. No one deserves this to happen to them so with a lot of hard work and with much love and caring from all of you we are going to pull off the best re-set ever.
Be Peaceful
Monday, May 16, 2011 10:38 AM CDT
Almost Done???
Reagen is almost done! She has one more dose of steroids to take tonight and then just continue her normal meds until the end of the month. Of course nothing comes easy for this kid, this summer she will still have to get IV prophylactic drugs every two weeks through August. Just a little twist but still a pain for her.
She had her last spinal tap and final bone marrow test on Thursday. Her clotting factors were a little slow so she had to have a transfusion before the procedure. (again nothing easy for her) She did great and everything went well. We are waiting for the test results to show she is cancer free, but we obviously don't expect anything so it's not a priority to get the results. I'm taking her to the clinic today for her IV treatment and should probably get them then.
The last procedure really wasn't a big deal in terms of celebration. It was more annoying than anything and it was very quiet. I think we are all just tired of the hospital and the routine. Reagen was in a good mood but quiet at times. Vicki and I just went through the motions and got it done. Like that last push when you need to just finish something you know?
Time has flown, it seems like yesterday that we started all of this. It's a very disconnected feeling in regard to the time and events that have passed. I think a lot of it has been blocked out of my memory and probably for good reason. Now is just day by day. We are making some plans, but not like before. More logistical plans as opposed to future plans. You know work stuff, Adopt a Pig stuff and short term plans for Avalon and getting together with friends etc, but not long term future plans. It just doesn't feel right.
Reagen should experience a continuous increase in how she feels after tonight. Each day will bring her further away from the side effects of all the cancer medication that is in her. We know from last time that it won't be immediate, but we will see a steady increase in activity and health over the next 3 - 6 months. It really does take that long for some of the effects to be completely gone. This is something we look forward to watching and experiencing throughout the summer and the beginning of the next school year.
Thanks for keeping up with Reagen and following her through this journey. Many of you have suffered through this with us, we recognize that and we are thankful to have such a wonderful group of supporters.
Peace
Thursday, May 5, 2011 10:47 AM CDT
Cross Your Fingers...
Reagen will finish up her last difficult round of chemo and steroids next week, and finish all of her chemo at the end of May. 27 months and we have seen a lot and that doesn't include the first 2 1/2 years Reagen spent going through treatment.
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I started listing all the nasty, unpleasant things Reagen has had to endure and I can't bear to share it. It's too graphic and down right depressing when you look at it on paper. While viewing all of the unpleasantness on my mind's walls the question I have is, was it worth it? Obviously as parents we think so, but even with a positive attitude and good prognosis from Reagen's oncology team, the best they can give us is "cross your fingers". All the medical advances and that's what we get? Fuck that, I want more, better and absolute.
Guess what, we are not getting anything more. What we do have is the memory of the last 27 months and of the great times we have shared as a family with the support of all of you who follow Reagen's journey. When we dissect that time we realize that we are in a much more fortunate place then many people in our community and in the world. Yes there have been some really difficult physical and emotional times, but those 27 months with Reagen and every day we share with her makes it worth it.
We will do our best not to dwell on what might or could happen. It's wasted energy. But it will creep into our minds and shake me right down to my bones. It will be worse than before when she gets a fever or just looks off or is tired or has a bruise or, or, or, or, or.... It will just be. So, even though we are intelligent enough to know superstitions have no bearing on the future and since science in this case can not yet predict an outcome to this journey, there is only one thing we can do...
Cross your fingers.
Monday, April 18, 2011 10:56 AM CDT
Blank Page...
Every time I update Reagen's site this is where I start, a blank page. I never know how it's going to come out in the end, it can be hopeful or sometimes depressing and sometimes it can just be factual with little or no real overtone and emotion. Sometimes it just flows, or doesn't and ends up being a train wreck of words and ideas.
Reagen is approaching the end of active therapy and the next month or so will be filled with new emotions and renewed hope for the future. It will be another blank page of sorts (to be horribly cliche) but one with some element of non-control.
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I started writing that days ago but have not been able to complete the update because I just don't have the words to describe how we all feel. I don't think we know. Regardless, I can tell you Reagen is doing great right now. I realize this is really the most important thing and what we use as our focus. The steroid week was okay and seemed to be a little easier because we know we only have to watch Reagen endure this one more time.
There was some confusion over the schedule and specific logistics of the end of therapy treatment, but we worked through it and I think we have the best scenario we could have managed for Reagen. She has to get an end of treatment bone marrow test that confirms she is cancer free. It's more policy than anything, but it would have meant another two days at the hospital and another time she would have to go into surgery sometime late May or early June. The way it's working out now they will be able to combine her spinal tap and bone marrow test on the 12th of May. That will also been the last week of steroids. From there she just takes her regular meds until the end of the month. Memorial Day weekend she just stops taking them, that's it. Should be a kind of soft landing of sorts.
That's that, I hope.
Sunday, March 20, 2011 12:06 AM CDT
Another Milestone...
So, on Tuesday morning with a group of docs and nurses around Reagen's bed, in the same room she was in almost two years ago to the day (Feb. 13, 2009), the mood was giddy. The mood two years ago was different but this time the two doctors who would be working on Reagen were kidding with her about switching jobs just for fun and there was laughter. Kind of funny in a weird cancer sort of way. Reagen was then rolled away to the O.R. without anything but a kiss and a wave to have her now monthly spinal tap and to have her port removed.
We were in the same exact pre-op room we have been in probably a hundred times before. That room feels like a part of us. Reagen even mentioned to me about how every time we go in I change the lights immediately to the way we like them. I'm all about mood lighting and I try to make that room calmer and warmer than the chaos around us and in our minds. It helps a little. It's the same room where we promised Reagen to get her Lilly if she kept us laughing through this hell journey. She has kept her promise.
The wait was a little longer this time since Reagen was having two procedures done. She did great and the surgeon described the procedure and removal of some scar tissue and did his best so she wouldn't scar on that site. She had a little pain the next couple of days, but nothing Tylenol couldn't help. (She went to school on Wed.) After she was awake she was able to head upstairs for chemo. The nurses in clinic got her in and out and then she was two treatments away from being finished.
Now Reagen is preparing for summer. Setting up supplies for Avalon and very excited for ESF day camp. She will be spending six weeks of normal kid camp, no chemo. Only reason she has to leave early is to go to the beach. Not bad :) She will also be taking riding and swimming lessons at camp. I'm sure she will now be achieving better milestones along the way.
Be Peaceful.
Monday, March 7, 2011 9:34 AM CST
So much for routine...
Reagen is unexpectedly one step closer to being finished with treatment. Last week during a scheduled blood transfusion her port developed some type of malfunction. It was a little nerve-racking for a little bit, especially since Mom wasn't there, but we handled it. Reagen had to get an x-ray to make sure that there wasn't any immediate danger and there was talk of having her port out the next day, but after the surgery team reviewed the situation we decided that it could wait. The surgeon could not determine the specific cause of the problem but in order to save Reagen from more tests etc, we decided to just have the port removed. The port is essentially useless at this point so Reagen needed to get the transfusion in her arm. Ended up not being too big of a deal, we just had to sit around for a couple hours while she received the transfusion. She slept, I read and then went home. It was just a long day.
I talked with the oncology team to figure out the best way to handle the last three treatments to save Reagen from extra needles etc and we came up with a plausible plan moving forward to that end. Reagen is on the schedule to have her port removed next week when she has her spinal tap.
Now we just need a little luck, some warm weather and good health to carry Reagen into the summer. It would be a nice wave for her to catch and one well deserved. She has been great about taking some extra meds recently and she is doing pretty well overall. Her body is showing signs of the long process she is going through and she is ready to be done with treatment. It's time to move on.
All relatively routine.
Saturday, February 26, 2011 10:28 AM CST
There can't be another February...
I know we are all tired of the cold and the snow and slush. We are all tired of being sick, the colds, the coughs and the dark, but I guess that's why we appreciate spring. February is particularly bitter because it always reminds me of when Reagen relapsed. In February 2009 I went into my bookmarks to the page where I update this site and I remember feeling I can't believe I have to do this again, I can't believe Reagen has to endure this again. Every single time I post I remember putting this caringbridge site in my bookmarks then and how I felt that day. Each time I click on it it stabs at me. I recall vividly the sleepless night before we were told Reagen relapsed and knowing in my gut and heart that she had, even though Vicki remained positive and refused to jump to conclusions.
I remember the cold, the ice and the dark. Each date on the calender reminds me of specific events related to cancer and Reagen's pain. That February was scary and hard to get through. I try to forget the dates and the specifics of some of the shit Reagen has had to endure, and I do for the most part, but February just won't let my mind erase all of those memories. (kind of hoping getting this out will) The calender just taunts me with the painful recollection of my little girl fighting.
Now I feel like it has been two years of February. We are all pretty sick of it and you can probably tell from the tone of this post. We are tired of that drive down 202. Tired of the routine that is not suppose to be and is by far, not routine. I can go on and list all the things we are tired of but then it just feels like whining. The entire situation just pisses me off. THIS IS NOT REAGEN'S HAPPILY EVER AFTER, and it should be.
Reagen finished her monthly treatment last week and she is doing pretty good now. Three more months of treatment and she is done. I'm glad that February is a short month, there can't be another February, ever.
Thursday, January 20, 2011 7:12 PM CST
Rough start, but rolling with every punch...
When this is all said and done and Reagen grows up to be this beautiful, confident woman don't give the credit to anyone but her. We push her pretty hard, me probably more than Vicki, but she pushes herself harder than both of us. She does what she does with our guidance, but make no mistake, she does it because SHE chooses to. If she doesn't want to do something she won't do it, flat out.
Reagen knows what the stakes are with her treatment. She might not know that she could die, but she understands the seriousness of having cancer. She knows she has to take meds and do what the doctors say. She does not like it or want to but time after time she does it. Before school, after school, before bed and on the weekends. She might complain a little, but not much and she does it. Just the other day before school she bangs down steroids and another pill, packed her lunch with me, brushed her teeth and gets ready to hop on the bus. Not even a whimper when I told her she had a couple more pills but they could wait until after I picked her up. This is after two grueling days of chemo (I'll get into that) and it's like she just decides it's not going to bother her. All her choice. I know I'm bias, but if you saw what I saw even in it's most raw form you would would be like "Damn Girl, you for real".
The week so far is fine. Monday was chemo and good numbers. They are still a little too high so we are increasing chemo again but need to get blood work next week over liver concerns as a precaution. It won't even be an issue for her to get blood drawn, she's like "WTF I have to leave Y early for this?"
Monday night ready for bed and no food after midnight since she will have general anesthesia the next day. She wakes up around 10 and says she doesn't feel good. Vicki says she feels a little warm, my stomach sinks and there is no reason for this, really, she was just checked out head to toe, blood to brain and low grade temp. She says she feels like she's going to get sick and when she says that she usually does and with her temp rising to a point where it is almost inevitable that we will be checking into duPont (to the point where we were actually packing bags) she pukes up her guts. It was bad and as I'm wiping her mouth she says with almost a smile, I'm better now. She crawls in bed with me and throughout the night we check her and guess what, no temperature, she's better now.
The next day she breezes through the spinal tap and we go out to breakfast with Mom-Mom afterward. The procedure was moved to a different operating room so Vicki couldn't go back with her while she got settled so she kissed us and rolled out with the procedure team which can be a little scary because it can be like 5 adults all in scrubs, hats and masks. But, if she didn't want to go she wouldn't. She told us that they let her hold the mask and then she woke up. She came home and played with her favorite buddies next door until dinner. I took a nap.
School yesterday but too tired today as the steroids are catching up to her. We expect a quiet weekend.
Peace.
Monday, January 17, 2011 8:46 AM CST
Moment...
Sometimes you never know how things will work out until they are over. Constantly asking yourself should I do this, should I do it differently, you never really know. We have the opportunity more times than not to weigh in on Reagen's treatment. There are so many variables and issues with regard to timing and follow-up etc that sometimes it would just be easier having no say at all. You are constantly questioning yourself and discussing the process that it can become exhausting. Unfortunately we have been doing this at some level since 2005 and we think we have we have become pretty good at it. This past week was one of those times we know we got it right.
We decided to push back Reagen's treatment one week so she could attend a bingo night at school and a birthday party she was excited for this past weekend. We did consult with her oncology team first to make sure it was okay since there are many considerations to take into account, including port access (make sure it doesn't clot after not being used for 5 weeks), breathing treatment and the effect on the remainder of her treatment schedule just to name a few.
There was a moment on Sunday night just watching Reagen be Reagen, that it hit me and I realized, wow she is really feeling good and I could see HER. She was very much like herself off treatment. It was a blinding reflection from the past that you wouldn't recognize unless you saw it. As Reagen's Dad I probably realize it like no one else can. It's just a way about her that she has, one moment that instantly brings me to a place where Reagen is without cancer. Just that extra week without her body being filled with the volume of chemicals it's use to, like a moment of clarity.
She had a great time at the school bingo party and crazy fun at her sleepover birthday party. It was the entire sense of normalcy with the added appreciation of good health and consideration of when times were painful and lonely that made the flash of a moment one that hit me so hard I needed to share it. It was intensely beautiful and quiet. Kind of like Reagen.
With that moment in my head we start another week of infused chemo, high dose steroids and a spinal tap. After this she will only have 4 moths of treatment left. Another milestone yes, but far from finished. It's long, but we are looking forward to Reagen continuing to live one moment at a time.
Thursday, December 16, 2010 1:14 PM CST
Five More...
Really starting to see the light at the end of the tunnel. My last post I was mistaken Reagen doesn't need four spinal taps, she needed six including today. However based on how the last two days went, if we can keep this run of health going, it will be a pretty smooth ride for Reagen. Singing on the way to the hospital and home, she is amazing. At the hospital Reagen is witness to much of the same stuff that we see including very sick kids and pretty upset parents. The children's hospital is a scary place and even more so when you get behind the scenes of the oncology clinic and operating rooms. She sees it all and just moves forward with what she HAS to do.
Personally I've been lucky enough to have had opportunities to be proud in my life. But I never have felt prouder then when I walk out of the hospital with Reagen on a day like today or yesterday. I just have my head a little higher, my brain clearer and a little more spring in my step . I can just feel the confidence from being around such a strong little girl. Reagen defines toughness and humility and without saying a word she goes through hell and laughs in its face. I just want to tell everyone I see going through the hallways on the way out how great she is, but I follow her lead and quietly and proudly escort her out of the hospital knowing that she is my hero. In the face of adversity it's just an amazing feeling that out weighs anything else I have ever experienced.
Reagen now starts five days of steroids along with her daily chemo. It will be great for her to get it done before the holiday rush and our New Year's trip. She is very excited for Santa and for our trip to "the White House" as she calls it, in Connecticut. Xmas will be better than last year but not as good as 2008 or next year hopefully, but they have all been special in their own way.
So we hope you don't hear from us via this site over xmas so you can concentrate on your family, your friends and your fun. As we all enjoy the season, think of the kids and the families that won't be home or who have lost someone special. Don't feel pity or bad for them but instead they would rather you appreciate the time you have in a good place with good people. You can't change their situations, but you can make the best of yours and that is a gift that you deserve to give yourself. I know that's what they would want you to do.
Peace, Good Will to All
Tuesday, December 14, 2010 5:06 PM CST
Ho Ho Holidays...
As we get ready for the season Reagen has enjoyed great health and has been crazy busy. A far cry from last year as I look at the calendar and old pictures. She is singing like crazy. Had a school xmas concert today and tonight she preforms for the parents. I can't believe how excited she is. She has been singing all around the house from the time she wakes up until she goes to bed. She is all dressed up in stockings and shoes and looks adorable. It seems so normal.
Of course reality likes to slap us in the face when we realize we pushed back her outpatient visit from Tuesday to tomorrow so she could enjoy this event, but so be it. We also received the wonderful news that during these last six treatments Reagen will have to have a spinal tap for four of them. Yay! We have had discussions with the doctors about all of this and it was more or less not expected due to paperwork, nothing is wrong with Reagen. Some kids get these weekly depending on the need to protect them and it's important for Reagen to get as much therapy as possible to avoid another relapse. (Hello reality, how the hell have you been) We haven't told her yet and we are both dreading that conversation. It's more the conversation and the inability of the hospital to make this happen smoothly that bugs us. The process is cumbersome and slow which make it frustrating for all of us, namely Reagen.
Expectations are for a much better xmas than last last year. After she gets through this stretch from Wednesday to Sunday things should start to clear out for her. Many plans to see family and friends over the holiday and enjoy some much needed cheer.
Peace
Tuesday, November 16, 2010 5:37 PM CST
On To The Next One...
Monday Reagen had labs, chemo and her breathing treatment. All went well except for her needing a few minutes to get mentally prepared once we walked in the hospital. Once she got through that, it was a very smooth visit. Who couldn't blame the kid for needing a minute or two to get her act together. We are de-sensitized to the process, but if you ever saw everything she had to do you would be freaked out I'm sure.
As expected her numbers came back a little high but good overall. They have increased the chemo she takes every week. Reagen only has six more months of active treatment. If she can continue on this path with her health it will be great, but we aren't counting our chickens just yet. She had a cold a week or so ago and fought it off and that was a big win for her.
Today Reagen had a spinal tap and chemo. The big deal was to get her in and out of the hospital so she could make it to school for a 1:00 pm event. She told me this last week and we knew it was important to her so we managed what we could to move the process along. Happy to report she hit school at 11:45. This is a tough kid. She had general anesthesia and had to be at the hospital by 7:15 am. The check in process they have sucks so that was a pain for her and she couldn't eat since last night so I'm sure she was hungry too. She went through all this and went to school??? Tough kid.
Happy Holidays - Reagen is excited for Thanksgiving. We have a lot planned seeing family and friends and she should be feeling pretty good this year. Last year she was still in a pretty rough cycle of treatment and especially at christmas. On christmas eve she had to get PEG shots in both her legs and she felt just horrible. Vicki remembers the details better than I do as I have found some way to black a lot of that stuff out from my memory. This year thanksgiving, christmas and new years should all be good. We have major plans for all three and will be as busy as ever.
Overall - As a unit we have found a way to live through this experience. Wether it's six months or six days from now our attitude remains largely the same. We make no specific determinations about the future. Don't get me wrong we make plans (college, trips and social) but we don't look and say this is what it's going to look like, because we don't know. We also won't be disappointed if it's not exactly as we have envisioned. By necessity we have learned to be present in each moment and for a large part not be bothered by the peripheral noise of other happenings or people around us. Politics, religion taxes, no taxes whatever, we really don't care. We focus on the here and now and enjoy all the family and friends we have. We are certainly not above the everyday static, that sounds elitist and entitled, but we have definitely learned how to move away from it and sidestep some of the minutia we are not interested in that brings people down. We are happy to see Reagen happy and being herself. We are happy with our work and social lives and we keep moving through life with a legitimate smile on our face. We are lucky and we know it, but it comes with a price and we are paying that too. You pay for everything one way or another, so be it. On to the next one!
Sunday, October 24, 2010 9:55 AM CDT
Going according to plan...
Reagen is just finishing up another round of chemo and steroids. She really did well and made it to school every day. Her numbers were great when she went to clinic on Tuesday. A little too good in some respects and if it continues next month they will increase her chemo. These are expected adjustments and not too big of a deal in the grand scheme of things. Overall Reagen is in great shape. Next month will be a little tougher on her because she will have to have a spinal tap along with her normal chemo.
We reviewed her treatment plan and confirmed her end date of May 28th. On that day she just stops taking all of her chemo and most of her other meds. It will start a pretty scary time for me and Vicki because we will now live the rest of our lives hoping cancer won't come back. We have discussed it with the Doctors and they are more concerned for us. Reagen will be fine, she is still young enough to just move on and doesn't necessarily know the risks of relapse, but that's not for her to worry about, that's our job. So as excited as we are for her to be done with treatment it will be bitter sweet. I'm just sick of cancer but realize that it will now never go away in our minds so we just have to figure out how to deal with it.
I know I haven't updated as much, that's mostly because Reagen has been feeling good and we have been able to be busy like the rest of you reading this. I realize that everyone has their own life and their own problems without hearing about Reagen playing the violin. Sometimes I feel like who the hell am I to tell anyone to liveStrong or take each day for the best it can be, because you are already doing that. Life is a challenge for all of us and just because the "C" word is involved with Reagen doesn't make anyone else's struggles less and I'm certainly no expert in how to live. I'm so appreciative of all the care that comes our way from everyone but I feel like I can never give it back because we are so involved with our shit it's hard to appreciate that other people have their own. It's just a numb feeling you get from being in this spot for what seems like a lifetime. We just want everything for Reagen because she has lost literally half of her childhood to this process and I don't have much left in the tank for anyone else.
Keep on keeping on (fill in your own cliche here)
Peace
Tuesday, September 28, 2010 8:53 AM CDT
Back on Track...
Reagen did amazing on the new steroids. A little rough on her over the weekend and loss of energy, but overall much better than the other months. No trouble walking, didn't forget her words and generally pretty normal.
She did get a boost on Saturday when a huge American Girl camper arrived. Maybe a little left over gift from her stay in Boston. (It was that bad, she deserved it) It was a nice gift to play with on a quiet weekend in between naps.
Monday was back to school, singing dancing and school bus. It wasn't even gym day. I'm telling you I've never seen anything like it. I don't know what they are doing at school, but she likes going.
Now we hope to fall into some type of routine and keep this going through May. I can almost feel the freedom Reagen will have. For us in May it gets a little scary without the chemo protecting her, but that's our job. For her, she gets to just be a kid, and that's all we ever wanted for her.
Wednesday, September 22, 2010 11:33 AM CDT
Back up to speed...
So, Reagen is back to school and doing great. She jumped in moving 75 MPH and has not slowed down. We all seem to be following her and getting back to a regular work / life schedule. (regular for us anyway)
We were informed yesterday that Reagen will be joining the choir. (by Reagen) This was her idea, so much for the shy act. She should also be starting her violin lessons at school soon so our house will be filled with some sort of music. Curious to see if we can mix the violin in with Eminem. I love to see her independence, it is such an indicator that she is feeling well.
Mornings are filled with several outfit changes, breakfast and a walk to the bus. A pretty good start to any day for all of us. Reagen just loves school and seeing her friends and it doesn't seem to be too much to ask for. I am so happy to see her so happy. She has been busy since we got back from Boston. That little hospital visit seems so long ago and she feels and looks so much better, it's hard to remember how sick she was which is fine with me because that is a memory I don't want to hold onto.
On the medical front, we went to clinic yesterday. Side-note, we picked her up from school went to clinic and she had her port accessed, blood-work drawn and chemo. Then she went back to school, are you kidding me, I had to take a nap. Anyway, her numbers were good and she was bumped back up to full chemo. The oncology team was not comfortable with he side effects of the steroids so they switched them. They did discover that there was a footnote on the protocol that called for a change if a patient was having some of the side effects that Reagen was experiencing. This should make her steroid weeks a little easier on her. We canceled weekend plans just in case she's not feeling well and Vicki and I have made our schedules flexible to accommodate her for Thursday and Friday if she needs to stay home from school.
After this Reagen has 8 months of active treatment. We can start to see some of the light at the end of the tunnel. We never get too comfortable, cause it could always be another train heading our way, so we will enjoy the ride through the tunnel. I'm too old to be afraid of the dark anyway. Full speed ahead.
Monday, September 13, 2010 5:55 AM CDT
Back To School!
Wednesday, September 8, 2010 1:27 PM CDT
Dodged a Bullet...
Reagen is really doing well. Her counts are up, fevers gone and itching has stopped with no meds. She had her port de-accessed today and got a shower too. She is really starting to feel good. Currently she is watching school via video feed eating pizza and drinking a milkshake. Not too bad for the second day of school.
We are shooting for release late today. Asking that she not be re-accessed if we can help it. No promises but a pretty good shot at getting out, tomorrow at the latest. We have been here for seven days what's one more? ( BTW a lot, so we are pushing )
This could have been so much worse if not for the quick action and care from the people here in Boston. Also, Vicki for knowing something was up with Reagen by just being her Mom. I'm not looking forward to the long drive or the mess that awaits with unpacking or all the stuff that has piled up while we were away. I'll take it though because anything is better than the feeling I had watching that helicopter take off without me and not having an idea of what was ahead for Reagen.
Now, she is safe and we are bringing her home.
Tuesday, September 7, 2010 12:45 AM CDT
Making the Turn...
A lot happened today already. Fever gone for over 24 hours without Tylenol! Itching has subsided to tolerable level. ANC is up to over 1,000! And best news, Reagen made it to school assembly via video conference! Huge thank you to Mrs. B and everybody at school for making that happen. It was a big deal for Reagen. Vicki was not going to let Reagen be denied her first day come hell or high water. Vicki doesn't usually want much, but when she wants something she usually goes after it and gets it. With the help of technology and Mrs. Baccile, Mrs. Guy and the student body she got the best we could hope for from Boston.
Sooooo, we are still here. Reagen will not be released until she is not contagious. Anti-viral will continue three times a day and she will also get IVIG which is a blood product that should help boost her immune system a little more. She will continue on only one anti-itch medicine and see how that goes. She is up and alert but boredom sets in quickly and she is anxious to get out of here. They won't give us a timing estimate yet but we are hoping by the weekend. No guarantees.
Many thanks for the emails she is receiving, she enjoys reading them. Walls are still closing in and much awaits our return home like work, school, house stuff etc, but right now we are breathing a sigh of relief for Reagen. All the other stuff will take care of itself one way or another. This could have been much worse for Reagen and we are thankful for the swift action of all the staff here and back at duPont. We are also so appreciative of all the support we have received from our friends and family everywhere. People have once again come out of the woodwork to help us through another difficult period. Visits from New Hampshire and Boston. Phone calls, texts and emails from everywhere all helped support us through this. One day we hope to return the favor in some form.
There is a web address to send Reagen an email that they will print and give to her
Patient@Childrens.harvard.edu
PUT REAGEN AMAND in the SUBJECT line
Monday, September 6, 2010 11:43 AM CDT
Slow process
Reagen is doing better but she is not out of the woods. Still having fevers except less frequent and not as high. Itching and uncomfortable still too but the medication via IV has been helping her. She gets upset about school but coming to grips. She gets agitated when her fever comes back which seems about right. Poor girl must feel so bad and I'm sure she is sick of feeling so shitty. I hope over the next 24 hours she can break the fevers and start feeling a little more like herself.
She hasn't had trouble breathing necessarily but her lung capacity is down a little so they have her doing breathing exercises. This morning she is looking a little better as far as the pox go. Her kidney functions are good and her ANC is actually up which is a good sign. Still a mixed bag with hemoglobin down but platelets up but still a little low. These are the things we focus on while we are in here, all indicators of the direction of Reagen's health. We shouldn't know this much medical stuff.
The walls are closing in on us a bit, but since it's a holiday weekend everything seems slow and quiet. That makes it a little easier since we don't feel like we are missing too much outside these walls. JUST OUR LIFE! But we realize this is our life and we deal with it. It also gives us license to ignore other insignificant aspects of daily life which is nice. It's a mental state we enjoy in our own world. ( this is my mind wandering in 50 directions, feel free to ignore, but it makes sense to me )
We will see the docs in a little and they will see Reagen's pox. They should be able to determine the progress she has made and give us more info as to what to expect and when. Vicki and I have already determined that she is looking better but they will be the ultimate judges. I'm sure that there will not be a commitment to timeline any farther out then tomorrow but we should start to get a feel. I can't believe we have been here six days.
Below is a link to a little guy we know from duPont who we have shared 3A with in the past. I invite you to watch the news clip and share in his moment. I also ask that you send all the love and positive energy you have to him and his family.
http://abclocal.go.com/wpvi/video?id=7651262#global
Sunday, September 5, 2010 11:41 AM CDT
Rough Night...
Not much sleep for anyone last night, but that was the least of our problems. Reagen had the worst of it with itching, fever and just plain feeling bad. She wanted to go home and see Lilly and be in her own bed. She was really upset about missing school and the first day. She said "I always miss the fun stuff, why?". We can't answer that question so it just makes a bad situation worse. She said she felt like there were ants crawling all over her. We tried oatmeal bath, a couple different lotions and benedryl and nothing worked. Finally around 5 am, I think, they gave her a drug typically reserved for patients on morphine to help stop the itching and that worked. She will stay on this until everything is crusted over and then she should be out of the itchy stage.
We received confirmation this morning, even though we pretty much knew last night, that it is chicken pox. That is good news in some ways because they can stop the 9 rounds of 3 different medications she is getting around the clock. Treatment was already started yesterday and we think we are ahead of the game. Now she will only get one medicine three times a day along with the anti-itching med. They will keep a close eye on her lung, liver and kidneys to make sure all are functioning up to par. They are usually the more dangerous areas for a kiddo on chemotherapy.
Timing is still up in the air as to when she can get released and when she can be around other people. Vicki and I are both okay because we have had chicken pox. This probably started while we were on Nantucket, maybe before. ( just in case you or your children were around her ). We think it could be contagious into mid week or longer.
Currently Reagen is resting, but not sleeping and still pretty upset about school. I think that missing school is bothering her more than the chicken pox right now. Why couldn't she have picked up the "I hate school" gene from her Dad, she would be happy to miss it. She "always misses the assembly" is what she has been crying about. It's very sad to witness her be so upset over something she has no control over. It makes it even worse when she feels so sick.
Her fever should subside as the virus progresses towards the next phase and the pox start to crust over. I hope that once her fever kicks she will be more comfortable and a little back to herself.
We are really enjoying Boston.
Saturday, September 4, 2010 1:47 PM CDT
Wild Ride
Starting from the beginning. Woke up this morning fever down and actually staying down post Tylenol, numbers up a little but a mixed bag depending on the specifics, but overall okay. Rash still there. Reagen was actually up and pretty playful for a little while. Rash was not looking any better, but she slept well and peaceful.
About noon when docs did rounds, fever came back and rash just not looking good. After review docs "think" it might be chicken pox. This can be dangerous for a kid who is immune suppressed. Cultures ordered, chest X-ray ordered and anti-viral ordered all to start right away. We also have to be moved to a negative flow room. Within two hours everything was done with the exception of the move. Anti-viral is running now. Kidneys are a big concern here (without going into a lot of detail) so hydration before during and after are very important to protect the kidneys from harm.
I am impressed with the speed of Boston team and also a little scared. This is a holiday weekend and we had an x-Ray team and machine in Reagen's room within 30 minutes after the docs left. I am happy with the swift action and now we have to wait for cultures to come back. Could be a day or two.
First day of school is out. No way she can go and we probably won't even be home. We haven't told her yet but it's not going to go over well. Vicki is already looking where the American Girl store is in Boston in relationship to the hospital. We need a make-up gift right?
I just want her to get through this without complications. Everything else in our world is at a complete standstill. We have discussed how dangerous this can be before with our docs and made sure to stay away from anything that could pass on the virus. Sometimes it just happens anyway.
Now, we keep a close eye on her. The next day or two will be long. Reagen is starting in a strong position and we hope that will help her fight this off. This should be manageable especially since they got a pretty good head start. There is also the possibility that it's not chicken pox. Reagen has tough built into her and if anyone can fight through this it's her.
3:20 pm update - Reagen is up and really chatty and happy. Seems pretty good and I just wanted to share that with you.
Friday, September 3, 2010 6:21 PM CDT
Up and Down...
Reagen's fever is literally up and down. She looks horrible when the Tylenol wears off. Then she starts to return to herself a bit when the fever lowers or almost breaks. Most of the time she sleeps. The benedryl has helped that and she seems pretty comfortable.
The rash on the other hand has gotten worse. It's pretty much all over and gets worse as her fever gets higher (over 103). It's hard to watch her be so uncomfortable. Just makes me sad.
Insurance denied a medical flight home to duPont. I was able to secure a private flight to Wilmington for Vicki and Reagen but the Dr. Didn't feel comfortable without medical staff on board. Honestly neither did I the way she looks right now so we are here for a while, probably the weekend.
It's big here and there are a ton of kids but we have not met any other parents yet. I feel like I know them already just by looking at them. I see the kids who are in the middle of treatment bald as can be and looking for some hospital activities. I see kids on steroids who are pretty pissed off, and I see the blank stares of the parents with them and you can tell they were newly diagnosed. I always want to tell them it will get better but I'm not able to fake it that well right now. We stay in the room with Reagen most of the time.
We appreciate all the calls and notes, but there really isn't anything anyone can do so thanks.
( don't mean that to sound as horrible as it does when I read it )
Reagen is enjoying all the email notes so thank you and keep them coming.
There is a web address to send Reagen an email that they will print and give to her
Patient@Childrens.harvard.edu
PUT REAGEN AMAND in the SUBJECT line
Friday, September 3, 2010 11:35 AM CDT
Fever and Rash...
Our girl is hanging tough as always. She still can't break that fever and just recently has developed a rash on her neck and back. She needs to have some more tests but most likely it's something viral that needs to run it's course. Her fevers are not as high, but they are consistent and return as soon as the Tylenol wears off.
The rash was identified just a short while ago and it is starting to itch a little. Reagen will get some benedryl that should help make it feel better. We are told that it is consistent with some summer viral infections. It still sucks.
No real change in plan. Her counts went up a little and her mood is up and down. She is already worried about missing the first day of school, so now Vicki and I have a goal. I also made doctors and treatment team aware of "our" goal.
Living conditions getting a little cramped here but it has been worse so we can make do with it. We all miss Lilly and didn't want the summer to end this way, but we still feel pretty fortunate. My heart breaks for Reagen whenever she is sad or worried about stuff like school and seeing her friends let alone all the shit she is going through. She is great about giving me hugs to make "me" feel better when I need them.
We are starting to get use to the idea that we might be here for a little bit but none of us likes it. Main goal is to get Reags feeling better, the rest will work itself out.
Reagen enjoys the emails so keep them coming...
There is a web address to send Reagen an email that they will print and give to her
Patient@Childrens.harvard.edu
PUT REAGEN AMAND in the SUBJECT line
Thursday, September 2, 2010 8:36 AM CDT
Helicopter Ride... ( written at 9 pm Wednesday )
Reagen is at Boston Children's Hospital. She came down with a pretty high fever today on Nantucket and had to be flown back. Her and Vicki took off at 6:30 and were there by 7:30. Currently Reagen is being admitted through the E R dept.
I jumped on a freight ferry and will bring the car and all our stuff to Boston. I'll be there by midnight or so.
Last report was Reagen's fever is down and she looks pretty good. We really don't know anything but initial counts and tests are all coming back normal.
Can't even comment on how I feel now because there are so many emotions in my head. I just want my little girl to be better.
I will try and update as I get information.
--------------------------------------------------------------------
Thursday morning.
Reagen had a comfortable night. Her fever won't kick and is actually up to 103. We are hoping this breaks soon. Counts came back lower than yesterday which is what we expected but stinks none the less. Reagen is very pleasant and sleeping a lot. I think she is delirious from her fever but cute.
Vicki and I caught a several hours of sleep and are doing ok. People here are nice and taking care of us. We have a private room, so it's been pretty much just the three of us.
Hoping to determine a plan of action after rounds. We would like to transport to duPont, but it's going to depend on what is best for Reagen.
There is a web address to send Reagen an email that they will print and give to her
Patient@Childrens.harvard.edu
PUT REAGEN AMAND in the SUBJECT line
Tuesday, August 24, 2010 3:53 PM CDT
Another One Down...
Steroidal Psychosis -
psychosis |sīˈkōsəs|
noun ( pl. -ses |-ˌsēz|)
a severe mental disorder in which thought and emotions are so impaired that contact is lost with external reality.
This is what Reagen suffers through during her week on steroids. It last for about 2 - 3 days and is very difficult to experience as a parent. Reagen has trouble talking, remembering words and literally doesn't know what she wants to do or what she is doing. She sleeps a lot and only wakes up to eat, take a bath and take her medicine. She is also unsteady on her feet, so we stay pretty close. She wants Vicki around mostly but has trouble remembering her name sometimes. Does pretty good with Mom and Dad and we try to keep her as alert as possible but mostly make sure she is comfortable sleeping and that she gets her meds done. We are told that there of no known cases where this can't be reversed once she is off the steroids and we have seen the same general pattern each month.
I will tell you that as she comes out of this each time we breathe a sigh of relief. It's nice to have our girl back. Usually she comes back pretty fast and very chatty. She is also very agreeable and just plain fun to be around. This month it just happens to be before our last summer trip and getting ready for school. She is very busy getting ready for both. There are many details to be taken care of for both events and Reagen likes to make sure she is ready. Back pack for school is already picked out and full of her supplies.
Next on the agenda will be closing out summer right and squeezing in as much fun and as many friends as possible for all of us. It's been busy, but we have also been playing catch up from last year. We are fortunate to be able to enjoy this time so that is the plan because we never know when that can all change. We see it every day all around us and we are not going to regret that we didn't do something when we had the chance. Damn the bills and the yard work and whatever else is "suppose" to be done. We don't really like rules anyway unless we make them up (kind of an only child thing too) so we are making our own this summer. We are going to invent our own disease and we are calling it :
Summer Psychosis - a mental disorder in which we don't care about external reality, we are feeling good and going to enjoy it.
Hope you catch it too.
Wednesday, August 18, 2010 9:30 AM CDT
Beach Girl is Back...
We all enjoyed an extended stay at the beach and I know one little girl who made the most of every moment. It was well deserved considering Reagen has spent more than her share of time locked in the hospital for extended periods. There is no way to make up for that lost time for her, but we did our best to try over the last three weeks. We were fortunate that Reagen was able to enjoy wonderful health and great weather for the entire three weeks after her last round of chemo. She had the opportunity to visit with friends, cousins and family and do pretty much anything she wanted while in Avalon. I can't even begin to list all the things we did, but it was busy, fun and stress-free.
We were able to be present and mindful of each day and moment we had while enjoying good health and lots of fun. That was part of the reason I didn't update this site as I wanted to focus on each moment we had and leave the grind of treatment where it belonged. We always know it's there. There is no way to escape it, I just wanted to put it in it's place day by day. I know that we can not run from it, but we just know it doesn't belong in everything we do. It has its place and I want to control that more then have it control us.
Now we are back to the grind and this is also something we are not trying to escape from. This treatment is what is saving Reagen's life and it has it's place too. We need to attack this like we do everything else and be mindful of where it fits within our lives. So on Monday we left Avalon and went straight to duPont. (Talk about a transition) It was a longer visit then we wanted, but numbers came back good and overall it went pretty smooth.
The nitty gritty is there are still some liver issues that we are addressing and we have had more discussions about the side effects of the steroids so we spent quite a while consulting with the Docs. We have a plan and are in agreement so we will grind forward with a specific criteria set for change in dosage or type of steroid.
Tuesday was actually a pretty good day. Reagen had to have a spinal tap but she breezed through it. Probably the best and most fluid procedure she has had to date. From the time she woke up to getting wheeled back to the operating room she was actually happy and smiling. I even asked her the night before (while she was picking out her outfit for the hospital) are you scared at all? Her response "no!", I said "ever?" her response "Never!". Kid has bigger balls than me, my stomach gets torn up every month thinking about this, but she makes it much easier.
I keep trying to count the amount of spinal taps, steroid pulses and other milestones Reagen has until she is done. The numbers don't seem to be getting any smaller. It gets a little depressing because it always seems so far away. Truth be told and what I have to realize is that she will never "be done". It's not actually a bad thing to come to this realization because it lets me focus on the moment and enjoy each one as they happen. Each moment that is good is another happy memory as opposed to a moment that I am paralyzed with fear and anxiety, who the hell wants to remember that? So we get rid of all the numbers, the count down, the planning for later and do it now. It's sometimes hard to keep your focus but with a little effort and a lot of support we make great memories each hour, day and week.
While we enjoy success in our fight I ask you to think about some of the kids and families that are having a much more difficult time. Some we know are facing extremely unfortunate issues and hard times. Keep them in your thoughts and send them positive energy. Also take a moment to realize how fortunate you are when you think you're in a difficult situation, many are facing issues we can't even imagine and we have no right to waste our moments while they are in this terrifying position.
Finally starting to understand LiveStrong as more than just a tag-line.
Monday, July 26, 2010 8:31 PM CDT
Reagen got through another one...
I would never want to tangle with this kid as she gets older. Tough and determined come to mind to describe her will and yet she accepts her situation with grace and ease. She reminds me of a Buddhist Monk that can kick your ass.
This round was not easy for Reagen by any means. She had a day or two where she had a very difficult time walking and remembering words. It is scary to watch even though you know it is temporary. First time around you literally would go out of your mind with worry. Now you worry a lot but you can keep it in perspective. Yay (not). It's a three or four day period where everything is hard for her. She would try for five minutes to tell you that she wants something, but literally can't say the word for bath or drink because she forgets it. Sometimes she will just wake up crying or moan while she is sleeping because she is so uncomfortable. She never actually complains though. That is where the grace part comes in. She may not want to take her medicine 2 - 3 times a day, but she does when she has to. To end it all on Saturday is great, but then on Sunday she has to take more than 15 pills. 13 of those she has to take every Sunday, all in one sitting, but coming off a steroid week just makes it worse.
Today we spent the morning running around together and doing errands. She was very chill and talked just a little , but was fun to be with. Her chatty phase will start soon and she is really funny then. By the end of the week she should be feeling pretty good just in time to head to the shore for vacation. It will be a good break for her. Vicki and I plan on being down for a few weeks, but working a little and heading home for a couple days here and there to keep our jobs.
No news is good news so I'll ease back on the updates. If you ever need someone to get your back in a bar fight, pick Reagen, she will not be denied.
Peace
Thursday, July 22, 2010 8:52 AM CDT
Clinic went well on Tuesday. Reagen went through the entire process pretty upbeat and care-free. It was a long day, but numbers came back good. Her liver is still being tweaked a little by some of the chemo, but all indicators are that at this point the actual cell structure is not changing. She will have to take a little extra vitamin supplement to help it out, but it "should" go back to normal as soon as treatment stops. Good news here is that the liver can take a lot of abuse and can heal pretty quickly. Also she probably has a liver like her Dad's so that has to be a bonus, and it actually made me feel a little better about the healing process.
Much of the appointment was centered around all the other things to check on. Levels of dosage, extra blood-work and overall did we cover everything. Vicki heads most of that up and we review many minute details, but all of which are important. We attack this together like we would work or anything else we do It just seems like the normal thing to do, but I do sometimes think maybe this isn't our job and do we really know what is going on? I guess I rather be safe then sorry and we do it this way because it's the only way we know how and it feels comfortable. I'm sure we drive the team crazy sometimes, but I'm also sure they deal with worse. (actually I've seen worse, so I think we are okay)
Reagen is doing well. All the medicine is kicking in and she is starting to sleep a good bit now. She is comfortable and wants Mom around, even asked for Dad which was a bit of a surprise, but we are here to keep her comfortable and fetch anything she might need to help her get through this week. Time just seems to move so slowly during the period in your lives you want to get past and then seems to pass so quickly during the fun and healthy times. I guess that true for everyone and not unique, it just seems more intense for us right now.
We had the good but disappointing opportunity to visit some friends at the hospital. All were there for various reasons (never good when you're a kid in the hospital) and as a reminder that there are struggles that go beyond the actual treatment of pediatric cancer. These kids (and yes Reagen probably too) have long term effects from chemo treatment. This will never be over for Reagen. It will always be there lurking in the background in some for or another. There are many variations and I don't need to list them here, but I was reminded of many of them when I had to sign a new treatment consent for which lists all the things that can result from treatment in the short term and long term. It can be a pretty scary read when all the sudden it's in black and white and in your face. Vicki saw me signing papers but didn't know what they were yet and kiddingly said "Are you signing your life away" and I said "No, Reagen's".
Monday, July 19, 2010 12:38 AM CDT
Hard to update...
Sometimes it's more difficult than others to update Reagen's status. It's hard when she isn't feeling well, but it's also an outlet. I find it harder when things are going well for some reason. (Good news being you have not seen too many updates and she has been doing fantastic) I think when she is doing well I don't like to face the actual reality of the situation. We have been in a nice place the last 3 or 4 weeks because things have gone according to plan. No surprises or real bumps along the road to speak of. We know what too expect, how to handle the medical and some of the emotional aspects of Reagen having cancer and we simply execute. Reagen is a big help with the process because she is such a good kid and she does everything she is asked. She seems to understand what she has to do and she just does it. She takes all her pills and deals with the needles and the Dr. visits and all the other crap that goes along with treatment. She does 95% of this with a smile on her face or at least in an okay mood. That is a lot to ask of a 9 year old who has been through so much already.
I hate the fact that we have to go to the clinic tomorrow and that she has to go through this again. Every time she gets into this groove of feeling well and really happy we have to knock her back down. We know it has to be this way but that doesn't always help make you feel better about it. You just have to find a way to deal with it. I think you just try to escape this period of time with whatever can keep your attention and make yourself numb to get through it. You want to make time pass quickly so it's just a blip of your month, year and eventually lifetime.
All that out of the way, the last few weeks have been amazing. Reagen had a great birthday week and presents and parties. She has spent time swimming and sunning and riding her bike. She spent a week at camp and some time at home and with friends. She has really just been like a kid should be during the summer. Her hair looks great, but she refuses to take off that wig, even for money. She is riding her new bike really well now and she is swimming pretty good too. These are all good things for her while in treatment and great exercise, especially with the steroids she is taking. We were surprised she could do her hand breaks as well as she does, sometimes she has trouble turning a door knob because her hand muscles get weak, but she's okay with them. Overall, we are all doing really well and having a great summer.
If tomorrow goes as planned we will go do what we need to do at duPont and just move on. We know what the week will look like and we will just do what we have to and count our way down. I think Reagen has 10 more months like this. It seems like a long time, but it's already been a long time so we will just take them one by one.
Saturday, July 10, 2010 1:49 PM CDT
Written a while ago but not posted tried to make changes to reflect the past I'm sure yup can follow along
Never home but not in the hospital...
Summer has been very good to us so far and we are pretty thankful and making the most of it. With power out at home it led us to the shore. It also helped us start our three day vacation in wildwood a little early too. Reagen really made the most of it and she is doing great, just for the record.
I have to list some of the things she did, even I forget how busy we were:
Swam in the pool everyday and is pretty good at diving now in the deep end, bike riding one morning for a solid 6 miles, every ride ( big ones mostly) on the boardwalk, including all coasters (twice) and the tower ride that drops you at least 6 times, 5 of those by herself, para sailing on a 500 ft rope with several dips on her request, dinner at a "nice" restaurant also at her request, a trash bag full of stuffed animals from games and a few things her Mom-mom bought her. Needless to say she had fun and was really pleasant to be around. You can never make up for everything she has been through, but, you can make the most of the the times she feels well.
We then headed back in Avalon and she has just left to see a friend and have a sleepover. I have no idea what to do without her so we are figuring out what to do with this now. Kind of taking things step by step and going with it. I figure we have learned how to go with the flow during bad times we will have to figure out how to do it during good times too. (mostly me BTW, Vicki is always pretty good rolling with things, people who really know me understand this). Should be a fun relaxed weekend.
Monday we headed home and Reagen went to camp for the week. It's day camp so she was home every night. She had one day she had to stop and get labs. Numbers came back good and she is back to full chemo.
Next week is Reagen's birthday. I'm sure we will be busy doing birthday stuff but happy to do it. Updates have been tough because we have been busy living and that's a good thing. The goal now is to go day by day which is easier said than done and keep the time she has left on treatment on schedule as much as possible.
Monday, June 28, 2010 1:46 PM CDT
Not home but not bad...
Reagen powered through last week like a champ. Interesting little storm knocked out power on Thursday and it's still out. We headed to my Mom's and stayed until Reagen was feeling better. She wanted to go to AV but wouldn't have been happy there when she couldn't do anything fun. Sunday she stated feeling a little more like herself so we headed down and will be here and there down the shore until after the 4th. We don't really expect power to be back until mid week anyway so it all worked out. Vicki and I are both able to get work done here and play with Reagen so it's a nice change for all of us.
I expect that Reagen's energy will rebound more and more as the week goes on and she has already been on several bike rides so she is on the right track. We have been given the green light to up some of her sleep aids so I hope we can help her get some rest at night too.
Time seems like it's flying. Vacation this week, camp for Reagen next week, her birthday the week after that then chemotherapy again. Bye bye July. When things are like this life seems pretty easy. I hate that she has to go through this, but if it runs as planned there is some type of security in it that allows us to all be a part of daily life and that feels good.
No news is good news. Enjoy the heat.
Tuesday, June 22, 2010 2:01 PM CDT
Plan for the worst, hope for the best...
How come two days going to the clinic and hospital always seem longer than two days on the weekend? It's a wild ride we are on for sure and it's one I wouldn't wish on anyone, but I wouldn't want to trade it either because there is always someone who has it worse. The sights and sounds of the hospital can grind you down even after just a short period. The stress of watching all those kids, and let's be honest especially witnessing your own child go through the pain, discomfort and anxiety of cancer treatment is difficult. I can actually understand why we hear of parents who discontinue therapy, because they must have reached that breaking point, not for themselves, but for their children and are forced to make that decision in what they believe is their child's best interest. I can't imagine the mind frame that they are in, but I'm sure it is nothing short of torture. We see and hear a lot of disturbing things at the hospital and I know we are shielded from even more, but it really does make us appreciate the situation that we find ourselves.
We came straight from Avalon to duPont which was a big enough transition, then you add in labs, chemo and a very non-pleasant breathing treatment and you have the ingredients for a pretty shit filled day. After a little anxiety waking up and a little on the trip to duPont Reagen did very well. She put herself to sleep in the car, though we knew she was listening to every word we said, and then did what she had to at the hospital. By the time we left (even knowing she had a spinal tap the next day), she was all smiles and hungry. She even ended up swimming in the late afternoon, including jumping off the diving board. The wig did stay on by the way. When it was all said and done, it wasn't as bad as it could have been.
Today I was sure there was going to be some sort of issue. (plan for the worst mentality) Reagen seemed to be running a little hot, but no fever by hospital standards, then one of her blood coagulation numbers was a little high, enough to question moving forward with the procedure. Reagen was happy the whole time kidding around and laughing, Vicki stayed calm and I faked it. The decision was made (by the Doctors) to go ahead with the spinal tap and Reagen never produced a fever. Things actually went as smooth as possible and we left shortly before lunch time.
As a reward and for Reagen's approaching birthday we went bicycle shopping on the way home. Three stores and a credit card bill later Reagen has a new bicycle (and helmet that she didn't need) for the summer. It should be in this weekend (2011 special order of course because she needed the blue one) and we are hoping that the steroids will be clearing her system so she can enjoy it a little on Sunday, but probably more likely to get some rides in on Monday or Tuesday. Regardless, we'll still going to get it as soon as it's ready. We hope this will make this week a little easier on her by looking forward to the arrival. I think we only have 11 more pulses like this, but it's a little too far out for me to start counting. Our plans now are to play today and tomorrow and we expect she'll be pretty down on Thursday through Sunday. We will keep the same type of steroids as one of the doctors had a very frank discussion with us to help make that decision. It is hard for to go through these weeks, but it's in Reagen's best interest long term, and I'll leave it at that for now. We'll stay with what has been working and plan for the worst and hope for the best.
Monday, June 14, 2010 9:29 AM CDT
Last week of school...
Last year this time was much more somber than this year as the end of third grade approaches. It was a very sad feeling I would get when I would by chance see the school bus go by in the morning or in the afternoon and knowing Reagen should be on it and she (we) should not have to be going through this again. I was glad when summer came last year and that specific reminder (one of many unfortunately) would be gone at least until September.
This year is a different story. Reagen is ready to close out third grade strong and this time next year she will be finished chemo! This will all be a blip on the screen by the time she hits middle school. That is our hope and our drive anyway, so we have to look at the situation with end game in mind and in focus. I know it's very far away, but if we can use that to get through each day we will get there slowly some days and quicker on others.
Currently Reagen is doing and feeling great. Having her chemo cut back will do that for sure, but we don't want to leave her like this too long, cancer is a sneaky SOB and even though the chemo is rough on her the alternative is much worse. We have been able to stay present during this stretch of good heath. It makes it much easier to do that when the house is full of laughter and chaos with friends. It's also nice when time is filled with logistics of pool parties, pick-ups, sleep overs and packing for the shore instead of hospital visits and chemo schedules. Reagen is still interrupted by some daily meds but other kids are too, so it is what it is for that matter. The other reminders of cancer like her wig, low counts and paranoid parents have just become the norm around here. They are so much the norm, Reagen actually interrupted playing with her friends this weekend to specifically tell me not to worry if I heard screaming, that they were just having fun and she would be careful not to get hurt. Really....? Who is taking care of whom here? I am so lucky to have such a sweet daughter and one that obviously is connected with me at this level. It makes me so happy to have this type of relationship with her.
I'd give you the schedule, but it's complicated and ever changing. They only wake me for the important meeting around here anyway, so I'll let you know that we are booked solid through August. This week will be a short one with two half days of school, a pool party and a trip to the shore to celebrate Father's day. I hope to get the job of carrying all the crap to and from the beach and be in charge of buying ice-cream. Maybe a cocktail on the deck overlooking the bay and a happy little girl. It's all I need.
Thursday, June 10, 2010 7:51 PM CDT
So far so good, just off a little...
Great weekend at the shore. Reagen had a ton of fun with some friends from home down in Avalon. A little rest for all of us away from the day to day.
Reagen is doing great and has had an awesome week. Her numbers are still a little off so we will have to hold some of her chemo over the weekend. Not too big of a deal, just a little disconcerting. We would prefer everything goes according to plan, but it just doesn't work like that. I guess we should know that by now, but it always seems to bother me when things don't go as planned. Everything else is normal.
Normal by the way is difficult to define right now for all three of us and our extended family. Normal has to be living in transition (which I think everyone does anyway) and not really knowing what tomorrow will bring. I guess there is no real start and finish for Reagen so normal is a target that is always in motion. We are learning to live like this and understand that this is our life, sometimes it's just harder than other times.
So we go with the flow. Lots of plans for the weekend and for the summer. We will go with the plan and try and be flexible mostly because we have to, whether we like it or not. We have the same issues as everyone ours just seem to be a little more extreme at times. We need to recognize that and then things will flow a little easier. I think if I write this then I can see it and somehow I can achieve it, I've tried dumber things, so let's see if this will work. :)
We are clear from labs, hospital and clinic until the 21st. Hopefully Reagen can enjoy a nice stretch of fun for the end of the school year and the start of her summer. We will do all we can to see to it that it happens for her. She is a very brave little girl and I know she deserves this.
TTFN
Thursday, June 3, 2010 3:47 PM CDT
Fighting her way back...
Reagen is getting back to normal. She has gone to school the last two days but she is still having a really tough time sleeping. No one has been sleeping very well, though I think we got a solid five hours in last night as Reagen's insomnia is finally starting to loosen it's grip on her. It's been a long couple weeks for everyone, with Reagen really taking the brunt of it unfortunately.
When she gets in a jam like this with low counts, off chemo and then on steroids it tough to stay focused. Your sleep, productivity and general quest for life at any normal level are all drained pretty quickly. Your mind starts to wander to terrible situations and circumstances and everything else that was important to you when things were clicking along are now no longer in sight. You try to tell yourself that these thoughts are crazy, this or that couldn't happen to you, but then you realize that it already did and you are in it and it could get worse. It's actually unbelievable, but it's not because it's true.
As you can tell, I'm in one of my most happy moods and none of this is even getting to me. I can't imagine how Reagen deals with it. I look to her as my guide and it can usually pull me through the dark times. I can't wait to pick her up from school (selfishly) because I want to see her play and complain that she is bored when she gets home. Then I know she is feeling better.
We are going to try and close out the week on a strong note with work and school. (I am the mystery reader on Friday for her class) We will all head down to the shore to re-charge our batteries and then get ready for the last week or so of school. Once we see Reagen be Reagen again we will then be ready to re-focus our attention on work, the charity stuff or the normal day to day. It usually comes back a little slower than when it's taken away. (as opposed to a temperature or low counts which seem to happen lightning quick) It does come back, and as long as it keeps coming back we'll do what we have to make sure Reagen has what she needs to get through everything.
Hoping for Reagen to sleep well tonight and feel good to enjoy the shore and all it has to offer and eight year old and her parents. I'm heading to school to pick up Reagen catch you on Monday.
Tuesday, June 1, 2010 12:07 AM CDT
Trying to rebound...
Our girl is trying, but it has not been easy for her. Reagen took her last dose of steroids this morning and is starting to come back to herself. It's tough though because now she can't sleep. She can only sleep for maybe an hour or so at a time and then gets back up for a little, then back to bed. It is like this all night too. Just not easy for anyone in the house. Tough on Vicki the most, because Reagen finds more comfort with her than me when she is feeling this way, so juggling work and little sleep is tough on Vicki too.
Reagen wanted to go to school today, but she just isn't ready. She has to go get blood drawn this afternoon to see where her numbers are so she can resume chemo and school. If she is up for it, she will go tomorrow. She will probably have a tough night sleeping, but should be close to normal by the weekend.
I just can't believe she has a year of this to endure still. It's always hard to look at the calendar during times like this, but I know that time moves very quickly, and this will all be over in the blink of an eye in the grand scheme of things. For Reagen's sake I hope these weeks for her seem short lived and don't linger in her memory.
Sunday, May 30, 2010 10:38 AM CDT
Quiet...
Reagen slept for 13 hours last night, woke up had a bath, some food and her medicine and she is back to sleep. These steroids really get to her about now and I think she actually wants to just sleep through it. I can't blame her, but it keeps the Amand house in a quiet and subdued mood. She is just more than half way through this round and will take her last dose on Tuesday morning. Probably won't make school until Thursday.
Things didn't work out as planned on Friday. Reagen's counts were not where they needed to be in order for her to go back to school and I think she started feeling the effects of the steroids Friday night for sure. She had a good day yesterday with Vicki but kind of on the quiet side. I expect her to sleep good bit today and tomorrow. None of us really get in a festive mood when it's steroid week, it's hard on Reagen and hard on us to watch because we can little more than keep her comfortable. You have to find something to occupy your time and mind or you just get mad because you can see how this treatment is stealing Reagen's childhood from her.
Our plans are to hang low here at the compound and get some work done outside and just chill. We will rebound next week for sure and we have pretty much the next six to eight weeks planned. A little crazy I know but they are flexible plans kind of.
Thursday, May 27, 2010 2:53 PM CDT
As the cancer turns..
When we last left our hero she was about to be released from the hospital to enjoy field day at school with her friends. Not sleeping well anyway we were treated to the news that labs had already been drawn to keep things moving along, this actually we were happy about. Great to be getting out and celebrating this quick turn. Then the evil nurse (really just for effect, not evil) walked in to report that Reagen's ANC was now less than half of what it was and all her numbers looked a little shaky. My mind - "no eff-ing way we are getting out, let alone Reagen being able to attend field day".
Our hero remains strong through the news that numbers are bad, but we have to talk to the doctors first. A few tears and she crossed her fingers her legs and arms that she could make it to field day. Again in my mind, drag it out so it's not one big punch in her stomach it will be easier for her to take that way, but we'll be lucky to get released from the hospital.
BTW this is all around 3 AM too so everyone is a little out of it. The big ogre (me) is now chasing down the resident and back and forth with the nursing staff about what could be wrong with our hero and how does this play into the dreaded field day activities. The beautiful Queen (Vicki) comforts our hero and reassures her that things will work out.
The Ogre is happy to find out that the wizard (head of oncology) is on call and authorizes our Hero's release from prison unrestricted and she is allowed to attend the games. Chaos ensues and the Ogre goes to pick up our hero's fine steed (Lilly) at the witches house (Mom-mom). Haha sorry Mom, but needed a witch in my story. Back to the prison, and off with the Queen, Ogre, Hero and steed back to our swamp.
Ogre and Queen not entirely happy about Heros numbers but go with plan to games and Queen will over-see all Hero activities. Ogre and Queen have conference call schedule with wizards the next day, or that day, but who cares it's now 5 AM and we are all very tired and Ogre has not showered in 3 days. (one evil nurse suggested not to shower as that might cast a bad spell on our hero so I went with it)
Game day goes on without a hitch, Hero is successful except she did not get drenched in drip, drip drench game. All will skip pool party after game day, which was a real bummer because the Ogre, Hero and Queen were looking for a nice break. Oh well, the swamp it is with some Rita's. (a favorite for our hero)
After a conference call and e-mails with wizards the spell of no school will continue until labs are drawn on Friday, which baffles the Ogre and Queen but were happy none the less that the spell was removed for field day. Ogre and Hero off to outpatient labs tomorrow morning while queen goes to work afraid that she may be de-throwned by her boss, King Karen. If ANC is up over 500 Hero may return to school on Friday when we get back from hospital.
Our hero starts steroids tonight and chemo will resume after labs tomorrow. Port procedure and spinal tap have been moved back one month. Based on Ogre and Queen's assessment of hero and her actions all should be well tomorrow and the spell shall be broken. The kingdom will celebrate and the Ogre will swim in the swamp.
Until next time when the hero is hungry for more shake and bake chicken due to the steroids, please tune in to As The Cancer Turns....
Tuesday, May 25, 2010 9:50 PM est
Reagen's Wild Ride...
Yes we are in the hospital and it didn't take long from my last post to get us here. However this kid has once again turned a pretty scary night into a success story and I believe she willed herself better because she did not want to miss field day at school. This is the only explanation I really have. And... if things go well tonight, we will be getting up early and heading to game day. Here is how it unfolded:
Decided to keep an eye on Reagen's temperature last night since Vicki had a "feeling". Soon after the the first time we took her temperature we checked again and it spiked to a level (over 101) that meant we had to call the hospital and get checked in. From the start Reagen was only worried about missing game day at school. Tug of war can be very exciting for an 8 year old and the fact that she was on the blue team this year. Before we get fully packed Reagen made it to the bathroom and got pretty sick. It was a bit of a scary scene since she usually doesn't get sick, and she spiked a fever after being fine an hour ago. I know these situations can deteriorate pretty fast, so my mind was in a bad place. She gave me a big hug and told me she felt better and did we still have to go. That hug helped but I wasn't assured enough to call off the trip to the hospital. She also asked while rinsing out in the saddest voice a Dad could hear "can you ask the nurses to try extra hard to get me better so I can go to game day?" Honestly I never expected to get her out of here but I said I will tell them and I'm sure they will do their best.
The usual insanity ensues, packing up, driving down fast (never see a cop when you need one to change the lights for you) and getting Vicki and Reagen into the emergency room to check in. I leave to drop the dog off at Mom-mom's and by then Vicki said Reagen's temp had gone over 102. Reagen gets her port accessed, labs drawn, hooked up to fluids and antibiotics then she could take some tylenol to break the fever and give her some comfort. By the way, she also got into the LAST room on the A unit. There are many sick children here, and this is the unit you go to when you are one of the more serious cases. (still don't know how I feel about that one)
She went to sleep but was restless while Vicki and I waited for the lab results. Labs came back pretty much the same as earlier in the day (yeah, same day roughly). A few hours later she broke the fever and finally fell into a nice deep sleep. She went fever free all night and all morning and that is a great sign so it gave us some hope. Reagen slept until almost 9-ish I think, and woke up asking about... yes, game day. We relayed this information to anyone who would listen including almost the entire staff. We also discussed this with Reagen's Dr. with the caveat that there were no other serious concerns (relapse, liver etc.) It didn't look promising, but they would see if they could be creative, including leaving the hospital to return later in the day.
We went back and forth all day with potential solutions and without a real health concern since Reagen looked great and was pretty active. Her numbers were not really off that bad, but game day or not we were happy she was feeling better and it didn't seem serious. The staff really worked with us to get this done and we now have a plan in place that gets us up about 5:30 to accomplish this game day task. The cooperation we received to be creative was amazing, especially considering the company of the other children that are on the unit and the seriousness of their conditions.
So that's where we stand. A little luck tonight and continued good health for Reagen and she will go to game day. I've never seen her turn around so quickly before, I swear she has healed herself to make this event. Talk about playing hurt, I want this kid on my team every damn time, so happy she is on my team now and forever. Just win baby, just win!
Monday, May 24, 2010 8:27 PM EST
Change of Plans...
It never goes the way it is planned. I don't know why we get wrapped up in our plan so much because there is always a cancer curve ball. Today Reagen's numbers were just okay, but some of her liver numbers were off enough that we had to scrub the procedure to remove her port and the spinal tap for tomorrow. Instead we spent a while at the clinic and she ended up getting her Vin and had to have her port accessed one last time (we hope). They want to have her numbers get more stable and because of the holiday she will have everything pushed back to next Friday.
Everything today just felt very stressful and nothing flowed very smoothly. I must say I'm speaking mainly for myself and Vicki. The liver thing kind of threw us and it is nothing to take lightly and could mean a ton of other issues for her if it's not taken care of. I don't even want to get into that because it can get scary fast. Reagen was fine and pretty busy doing homework, dancing and showing us how she can kick better with her new shoes. Other than crying once because she had to wait around so long (and it was a long day) she was in a great mood. Actually she just sang her way through taking 5 pills of chemo, literally. She is currently singing "it's gonna be 82 tomorrow" after she asked me the weather for school. This kid seems to be guiding me through this hell journey more than I guide her. We talked about everything earlier tonight and she told me that she is "never scared" at the clinic or the hospital. I asked her why she cries sometimes and she says because she just wants to get out of there. She just wants to be normal, but she is far from it as far as I can see.
Our biggest concern today wasn't even her liver, it was the breathing treatment she has to have once a month now that her port is being removed. It tastes horrible and is a very unpleasant treatment. We told her she could take breaks and chew gum. Bought her some candy to help with the taste and for breaks. She has tried it before but she hasn't been able to tolerate it very long. It can take about 30 minutes or so depending on the length of breaks kids take. I waited outside and I feel this tap on my back and am greeted with a big smile from Reagen who was doing the tapping. She looked so proud. I was shocked because she hadn't been gone very long. She finished with only one break and did the whole thing in 15 minutes. We were very happy for her and at that point we seemed to be on track to a good visit and fast exit. (Obviously that didn't happen)
What's next? I guess we get in this moment, accept it and push forward. I know it doesn't sound like that big of a deal because we are just moving some dates around and stuff, but it's a mindset thing. You get prepared to fight a certain way and someone changes the rules on you or the start time. It's a mental drain. Vicki has to shuffle her work schedule and we have to schedule and re-schedule plans for this and that. This stuff is normal for everyone, I know, but it is the mental state that everything you do revolves around treatment and what you can do to make this easier on Reagen. I'm probably just a little tired from the long day. At least we live to fight another day. There is a little girl singing in the hallway outside my office, that somehow makes it all better. Time for a tuck-in and a kiss.
Goodnight.
PS - almost 10 pm and Reagen is now running a low grade temp. Nothing we have to call in yet, but we will be checking in on her all night. Uggh
Monday, May 17, 2010 10:48 AM CDT
Back on Track...
Reagen is back in school. She almost ran me over heading out the door, didn't want to even stop for a hug. It was a busy morning getting up early to get her to duPont so she could make school. Numbers are right on target and we will get a call later today to confirm re-starting chemo, but probably at half dose until next week. We will also get her liver numbers back too and see if that has returned to normal as well. Our expectation is that it has, but you never count chickens when dealing with cancer.
Weekend was awesome. Of course never without it's drama regarding health and Reagen. She took a fall Friday night and ripped up her knees. I fully expected it to lead to infection, fever and trip to the hospital at 3am. But it didn't and we were grateful for that. Reagen played and played then played some more. Got some good beach time in and had us all running a lot. Red light, green light can be pretty fun on the beach. She found she really likes "beach fries" and had us out to dinner Sunday night so she could have them. Didn't think I'd hear this from her "Dad I want to go to the Princeton tonight", at least until she had a good fake I.D.
Should be a pretty normal week which we can use to prepare for next week. Very big milestone next week, but we'll enjoy this win for Reagen and worry about that when we need to. Reags is really doing well, thanks for checking in on her.
Friday, May 14, 2010 8:46 AM CDT
Settled in...
Reagen seems to have settled into the routine of no school pretty easily. We have been quiet busy at home but busy none the less. Vicki and I have had to split up days for work and the like, but things are okay in general. Reagen also had to go on a vitamin K to help control some liver numbers. She has had to do this before, but the team is always cautious with her liver since it is so sensitive and could present serious complications if it's not watched. We should know where she stands on Monday since she has to get labs in the morning.
We are pretty hopeful she will be able to return to school and get back on chemo after Monday, but we have to wait and see and let her body heal. The week after that will be tough on her too since she has to do a breathing treatment, get chemo, will have a spinal tap and she is having her port taken out, which is bitter sweet. Once the port is out she will have to get chemo via an IV in her hand every 4th week and that comes with another whole set of issues.
This weekend will be spent in AV for some fun but away from crowds just in case her numbers are low. Probably do some bike riding (can't keep her in a bubble, though I think I would if I could) and some beach time if the weather permits. We have had a few very fun days kicking it around the house, but Reagen needs a change of scenery and so do we. Vicki has been working a lot and we all need the break. A little mental and physical healing will be good for all. I'll update next week with some good numbers and strong attitude to get us through this next week of treatment.
Getting prepared.
Wednesday, May 12, 2010 6:42 AM CDT
Good and the Bad...
Should I write the good news first or the bad news? I can never really figure out the best way to let everyone know how things are going and still keep things positive at the same time. Maybe I'll just mix it all up.
Reagen went to the clinic yesterday and we received mixed news. Her sugar numbers that we were worried about were fine but her overall ANC was low, so low they don't want her to go to school. She took that news pretty hard. I don't think it's the learning she will miss as much as the feeling of being normal and included. She is out at least until Monday and then she might be able to go back after they check labs. It also means no chemo until her counts bounce back so she is off everything for right now which I'm sure she won't miss.
We had some discussions about her steroids too and sometimes the reality of the situation just smacks you in the face. We have to discuss the possibility of relapse and those types of things during these conversations and it's just hard. It also comes on the heels of finding out that a little boy we know from being in the hospital has relapsed after his bone marrow transplant. We are ripped up inside for him and his family because we know it is not a favorable position. This too reminds of the reality of what Reagen is dealing with and what she is fighting through.
I wanted to share something good, but now find that I don't have anything front of mind that is all that great. For Reagen even the good news about not having to take any meds is clouded by the fact that she can't go to school. She still has a year of active treatment left and we are all already tired of this. Things just change in your mind so fast from happy and ready to fight to feeling beaten up and tired. I can't imagine what goes through Reagen's head from time to time, but she just keeps going so we will too. The kid really doesn't know the word quit.
We are okay, just bumped and bruised a little. Nothing we can't handle or brush off, just need a little time to jump back in. See you on the flip side of this with some good news.
Thursday, May 6, 2010 8:41 AM CDT
Reagen Doing Great...
I just wanted to share that Reagen has bounced back very well from her week of chemo. She is back at school and in full stride doing everything and anything. Soon after I posted last she came into my office and asked if she could go to school, again I wonder if she is really my child, so we gear up, brush teeth and jump in the car. She never really looked back after that with the exception of a little trouble sleeping Monday, but not too bad.
Wednesday was a great day for all of us even though it was very busy. We headed to Mom-mom's for the carnival that was across the street and Vicki spent some girl time at the salon not too far away. Reagen rode almost every ride with the exception of the little kid rides. She had me on the pirate ship about a dozen times, bumper cars with Mom-mom another half dozen and several rides on the tilt a whirl plus many others and games.
I was a little concerned that her wig could come flying off on some of the rides. Really only concerned that she might be embarrassed not really worried about freaking out the crowd with flying hair. I mentioned this to her quietly just to keep a hold of it, then she really surprised me. On her own she came up with the idea to put some of her hair in her mouth when on the rides. She did it very inconspicuously where my first reaction was to tell her not to chew on her hair, then I realized why she was doing it. She cracks me up. The night was long and Vicki showed up a little after 9 pm while we were on a ride and Reags was very happy for the surprise visit. We got home pretty late for a school night but Reagen was up and out of bed with no problems and danced her way around the house and through breakfast this morning. Ke$hia and Lady Ga GA are our morning favs and it can get pretty loud here at 7:30 am.
Today Reagen has a field trip and then on Friday a sleep over at Mi-Mi and Pop's. Saturday she has a birthday party. She is busy busy.
On the medical front we did receive a good report on her metabolite numbers. This is how they measure the efficacy of the 6mp she takes every night. (there is a lot of history about Reagen and this drug with relationship to her liver etc, that would fill the entire post if I went into specifics) The good news is the numbers that should be high are high and the numbers that should be low are low. It's another small win for her and we'll take every one we can get.
Monday, May 3, 2010 7:21 AM CDT
Rough One...
Reagen is doing well, but these steroids have not been kind to her. She has been pretty restless since she got home from school on Wednesday and slept most of Thursday and Friday. She did perk up to go to her school fun fair, but I think it was pure determination on her part. She was crashed most of the weekend, yet she really couldn't sleep and was in a good deal of pain and very uncomfortable on Saturday night. She got up for school today, but you could see she really didn't have any energy back yet. We decided to let her sleep a little and told her that if she wanted to go in later we would take her.
This round is a big switch from before to say the least. The combination of chemo is the same, but the steroids are different and have just been nasty. She has been pleasant the entire time and she takes every dose of medicine we give her with hardly a complaint. She really is a trooper. It's hard for us to watch and we do what we can to make her comfortable. We know what this is like from last time and every time she gets feeling really good, she has to get this chemo and steroid pulse, but that's what will ultimately save her life.
She should be almost back to normal (by Reagen standards) by the end of the week and she has a lot of fun plans already set for the weekend. We hope this clears her system quickly and she just feels better.
Wednesday, April 28, 2010 1:52 AM EST
My Best Little Friend
Before I get into Reagen's clinic visit I have to share a story about hanging out with her on Monday. It's always different when it's just Dad (and it's raining) to hang out with when there are no friends or Mom around. It's kind of like, okay we are stuck with each other let's make the best of it. Not that we don't love each other, it's just that Dad's don't play babies all that great or like to pick out clothes and they don't let you win at video games. What Dad's do is cover the basics, make sure Reagen has a snack, does her homework and take any necessary medicines. With that you get to watch almost anything you want on TV while Dad works on the computer and talks a lot on the phone and checks in on you every 10 minutes saying "you okay, you need anything?"
Monday it rained and Vicki had to donate platelets at the blood drive and wouldn't be home until late, and we had no plans for entertaining each other like bowling or ice skating or some outdoor activity. There we have it, the perfect storm. After the usual how was your day and homework was done (which by the way she does with no fuss or problem) we proceeded to get a snack and watch TV. I headed to my office and bugged her every 10 minutes to make myself feel better. After a while just when I was in a flow of work for some of the charity stuff and some other emails etc, Reagen pops into my office and says "hey Dad can we go to the library?" I was trying to think why this was difficult to answer or I was trying to figure out why she didn't say Justice or the mall, so I hesitated a minute. Looked around and said okay, did you go to the bathroom and did the dog recently go to the bathroom? With positive answers to both we were out the door, checking for library card, got it, let's go. Oh yes, make sure I have some cash on me because I'm sure I have some fine waiting when we go to check out a book.
At the library, it's a normal trip, Reagen is looking around and I'm texting Vicki. I needed to go to my other office to drop some stuff and pick some stuff up and Vicki is now telling me it's going to be later than she had originally planned. Schedule is screwed, oh well won't be the first time. Me and Reagen were having a good time looking up subjects in the computer then trying to find them on the shelf. A scavenger hunt of sorts for us, but it was fun and we were really just enjoying what we were doing. However we were both getting a little frustrated since Reagen couldn't find something she was interested in and I couldn't work out a good time to adjust my schedule. In the span of about a minute, it all came together.
I thought, the person I need to meet knows Reagen and wouldn't mind if I brought an assistant, so we will both go to the office. Reagen then came to me and said "Dad can you help me find a book on poetry?" Okay, one more scavenger hunt, three poetry books for children, no fine and we are out the door. Then Reagen said, "can I do my 30 minutes of reading in the car?" (Is this really my kid?) "Okay, go for it, I'll turn off Kid Rock", I say. We spent the next half hour driving with her reading and then re-reading me poems that she liked. She helped me in the office with no complaints. She spoke politely to the people she met and did everything I asked. She was just so cool to hang out with. When we got home she did all her night time stuff, including eating dinner at 8:30 pm and took all her meds, PJ's and brushed her teeth without a single complaint. (If it sounds a little like I'm bragging, I am, this kid is really just that good) Before she went to bed, she just asked if she could stay up a little later to see Mommy. Okay! Not a huge request, it was late already and Vicki was due home in 15 minutes. And to top it off, she wanted to read more poetry, so we took turns reading each other poems we liked until Vicki came in to kiss her goodnight and tuck her in. Man, did I just have the best Monday ever!
Real quick, the clinic visit today...
First of all it was "real quick", they had everything ready and we moved through all the steps very quickly.
Reagen started a stronger steroid so we are hoping it goes as well as the last two months, but we are keeping a close eye on her.
Numbers were only okay. Lowest ANC she has had in a while and her glucose numbers were real high. ANC is due to chemo, but we will extra tough on hand washing, the glucose numbers need to get re-checked in two weeks, they have us a little nervous, but we have to wait and see.
Overall a good visit, just need to follow up.
Best part of our visit today was a special surprise guest at dinner. We always like to do something family oriented on clinic day. Many times we end up shopping and then dinner, but we replaced shopping with a visit from Reagen's teacher Mrs. Ryan! Reagen was excited when we told her and it was like having her old buddy back. We enjoyed dinner with lots of giggles and fun. They haven't really been together since Reagen is back at school so it was nice to visit.
Sorry for the long post, but thanks for keeping up with Reagen.
Wednesday, April 14, 2010 2:05 PM CDT
Numbers Good...
Reagen an I had a quick trip (relatively) to the clinic yesterday and things went well. She had a moment just before she went in to get her weight and blood pressure when I think her emotions caught her off guard. She hugged me and I realized she was crying pretty hard. I guess she just goes with the flow until all the sudden it hits her. I felt bad and just hugged her for a minute or so until she got herself together. The nurses are always very patient and never rush her or any other kids when they are having a tough time. I think part of it was that it was very crowded when we walked in too. There were a lot of kids in the clinic and all the beds and transfusion chairs were taken. It was overwhelming for me at first glance, but I move past it pretty quick, I think it hit her kind of hard.
After she had her port accessed she got calm, settled in and watched TV. I went downstairs to get her something to eat and things ran pretty smooth from there. She even took a little nap while she was getting her medicine transfused (it takes an hour). The room thinned out about 20 minutes after she started and I think that helped too. By the time we left she was bouncing out of the room like nothing ever happened.
Numbers came back good and things are where they need to be. It's always a little scary waiting, but really for me and Vicki than Reagen. We had to review a bunch of different treatment decisions that Vicki and I have been discussing since our last visit. We really just weigh in and probe with questions, and the oncology team makes the decisions. It is a team effort for sure though because we know Reagen so well and what is best for her and they know what will work best for her cancer so we collaborate on how to handle specific issues. It's a little stressful sometimes, but you just do what you have to for Reagen to have the most effective treatment with as little impact as possible.
Reagen has really been doing well on all fronts right now and it really makes it easy to live life. She has been amazing and fun and busy. We are all looking forward to the summer, but enjoying her in school and our weekends together.
Wednesday, April 7, 2010 8:49 AM CDT
Great Great Great...
Yesterday I walked into school where I was picking up Reagen from the after-school Y program for the first time since she relapsed and it was such a surreal feeling. It just struck me as very calm and intense at the same time. It seemed like after all Reagen has been through, here she was just being about as normal as a girl with a wig on can be. I don't think given everything she has been through and everything she still endures she could be any happier. She had such a great easter weekend compared to last year when she was listless and feeling so bad she couldn't enjoy her cousins or the day very much at all except in short spurts. And, this is all after chemo last Tuesday and a steady dose of steroids until Saturday. Unprecedented in our experience with her treatment since it started.
It took all of two minutes after we got in the car for the planning to start. "Dad, can I go to the barn, Dad can I go over to this person's house on Friday, Dad can I go for a walk with the neighbors" . Of course my answers is yes, yes and yes and whatever else you want to do. At home we had all of 10 minutes together, changing and getting a snack and drink. Helmet on and there she goes down our driveway on her bike up to the barn. I watch her ride down the driveway, nervous she is going to lose it on one of the turns, I stand calmly but ready to run down if I have to. No need, she is out of site before I know it. I hate to see her go, but I know I have to let her. I still make her call me from her cell phone when she gets there even though it's less than 1/2 of a mile away, but I need my comfort. I call Vicki hoping she's okay with it and I can tell we both feel the same.
I call Reagen in a little while to check in. Seemed like hours, but I'm sure less than one. I get "yeah?". Me - "Just checking in, everything okay?" I get "yeah! I'll call you when I'm going to leave" Me - "okay, have fun, be careful" I get "Okay Bye" in very happy voice. Me - "Love you". I get - click, silence. I pause in the silence and smile to myself and try to be busy, but I am happy and know we have done a good job. Damn kids.
Wednesday, March 31, 2010 2:01 PM CDT
Another visit done...
Reagen went back to clinic yesterday and we had a pretty standard visit. It seems like forever ago was the last time we were there. No problems with the port or the access and no problems getting any of her blood drawn or getting chemo. They thought she may have had a little rash due to the one drug she received, but it was more precautionary than anything. I think it was because she was laying a funny way in the chair for 40 minutes, but I'm okay playing it safe.
Reagen's numbers were actually too high. The first month of maintenance they can bounce around a bit so we have to go back in two weeks to get them checked again. There could be a lot of different reasons for the high ANC, but it's silly to speculate. We know it's not anything to be concerned about, but we still are a little. They like her ANC to be a little lower (around 1,500) and she was over 5,000. It's good for fighting infection, but it means a lot of white cells that could be weak and open to cancer. You just like to hear " okay everything looks great, go home see you in four weeks", but that is never the case. This is serious stuff and you can't forget it just because you are not there every week.
Reagen is going to school while taking steroids. She seemed pretty good today and we expect her to be okay tomorrow too. Friday through Monday will be the toughest days for her. She has off of school those days so she won't miss anything, but it's kind of a shitty way to spend the weekend and easter. Hopefully after Monday she will bounce back to the way she was and get right back in the groove again.
School is going well for her and she is surrounded but good friends and the watchful eyes of teachers and admin everywhere at school. I know everyone looks out for her but we are always trying to make sure she doesn't get any special treatment. We are very happy with her progress and ability to jump back in. She really is amazing, even coming from her Dad, I think it's true.
Happy Bunny Day!
Thursday, March 25, 2010 8:09 PM CDT
Reagen doing great and coming to terms...
I forgot in my last post to share some great news we received about Reagen on the medical front. The outcome of her bone density test came back with normal results. It's a big deal heading into this maintenance phase since she will be on a steady dose of steroids each month. Typically kids that go through this type of treatment have joint problems when they get older. Many have to get knee and hip replacements early in their adult years due to the effect of the steroids. Reagen's results put her in a good position to go through this stage. She is not out of the woods or guaranteed her joints won't deteriorate, but it's a great place for her to start.
We have not been back to the clinic in three weeks. Reagen even asked the other day why we hadn't been back. In many ways it a good thing for everyone, mostly for Reagen. In some ways for a parent you miss it because you have no idea what's going on inside her little body. We spin our heads on every cough, sniffle or cramp that comes Reagen's way. We don't know where counts are, so we don't know if she is low on red or platelets. We don't know if the cancer came back. Of course we have no real reason to suspect it would come back, but the thought is always someplace in the back of our minds. I was reminded today from a friend and through some of their experiences not to quickly push past this thought, as it will haunt both Vicki and me if we don't deal with it. Since Reagen has relapsed we have kept ourselves very busy. We have done everything we could to avoid thinking about the situation we are in and how to be as normal as possible. The events of the last three weeks with Reagen getting back to school and celebrating all of the excitement about her being a normal little girl have helped push our thoughts away yet again. "Getting busy", "getting back to work", "going to Vegas" all great things and exciting in their refreshing way, but, but but. The thoughts of relapse don't go away easily though, ask any parent who has a child that has relapsed and they know all too well, once bitten twice shy. These thoughts will wake you up in a cold sweat in the middle of the night and they will creep into a seemingly routine moment and distract you from any chance of every being normal. It's always there even when no one else can see it and even when we try to hide it from ourselves. It can wipe the grin right off your face in a hot second during the happiest of times, I've seen it and I've felt it.
Are we scared Reagen could relapse? The real answer is yes, always. Do we have a reason to be? I don't really know and I will never know until it happens or if I die first and don't witness it. It's kind of a difficult way to live sometimes. (I know, huge understatement, but there are a lot of people out there dealing with much worse situations) You can only be so busy and "just move on" or "get over it" so many times until the paranoia and the fear grip you to a point you can't move anymore. I'm not trying to say that we are these over-anxious, needy, on the edge of losing it parents. I know that now we need to recognize this moment and acknowledge our fear and give it due credit before we move past this horrible experience. We will always protect Reagen from this until our last breath, but we can't just clear our thoughts and get past it, we must think about it and deal with it. There is no retroactive way to attack this if we let it go too far.
This is the tirade of a father just starting to deal with a situation that has started almost five years ago. I'm sure we will face this next part of our journey with the courage and determination we have learned from Reagen. This fight is one that is in our heads and in some ways is a little more difficult than cancer because the enemy is always hiding or changing and sometime we are the enemy ourselves.
This weekend we are heading down to Avalon to chill. Not to run away, but to get some time to deal with the last five years. Trust me, we will have a lot of fun but we won't be there to hide and we will talk, think and acknowledge this moment and this period of our lives. Cancer has stolen most of Reagen's childhood and we will not allow it to take away from her or our future together. The journey continues, bring it on.
Tuesday, March 23, 2010 3:30 PM CDT
Life seems normal...
Life seems pretty normal right now, for what we are use to anyway. Reagen is chugging along with school and friends and doing normal kid stuff. She is an explosion of fun and giggles. Vicki is back to a normal work flow, which is always busy for her, but now on her time and not around a chemo or hospital schedule.
Reagen has been doing great with her meds. She still has to take a pill every night, which is really no big deal to her right now since she is so use to it. The tough one is on Sunday when she has to take 8 pills. Vicki came through with a winner on that one though. She got a bubble gum suspension liquid that we crush and mix the pills in. This past Sunday they went down like candy, problem solved.
We have a bunch of medical decisions to make next week when we go back to the clinic regarding Reagen's port and some different types of medication. It's nothing that really changes her course of treatment, but lifestyle issues. We have been putting off discussing it mainly so we all could enjoy Reagen feeling well and this new found freedom.
A week from today we go back to the clinic and start another round of chemo and steroids. Each time we go we get Reagen a little closer to the end of this treatment so in some ways we don't mind. We usually go out to dinner after or try and do something fun so it's not a total bummer day. The first few days will be good, but Reags will be pretty tired by the weekend. The next few days after that she won't be able to sleep but she is usually in a pretty good mood. Not sure how school will work out, we are going to play that by ear.
Overall we are good, and looking back on the last year it's hard not to be too happy all the time. We run around like freaks we are so damn happy. (most of the time) We might start to complain about something and then if we just take a moment to reflect on what we were doing this time last year the complaint is gone.
I like sharing the good news about Reagen as opposed to some of the obstacles she has had this past year. I feel more in control and less needy when she is feeling good. Thanks for keeping up with Reagen, and us.
Monday, March 15, 2010 9:52 AM CDT
Our girl is busy...
I don't even know where to begin since this whirlwind started last week. Reagen is feeling great and it makes us so happy to see after the year she has had. Let's start with school. Reagen could not wait until Monday so she eased into it with afternoons on Wednesday and Thursday last week. She was ready to get on the bus by Friday and have pizza at lunch. I was away and luckily home late on Thursday because there was no way I wanted to miss this event. It's a big deal for all of us. We were joined by our neighbors Friday morning and Cooper and Reagen got on the bus, the way they are supposed to. It was a little surreal but not overly emotional, just a push forward. I think Vicki and I are numb to some emotions right now and we are all about the moment, good or bad. This was a good moment and we certainly enjoyed it but didn't let ourselves get overwhelmed with happiness either.
Friday afternoon Reagen was greeted at the bus stop by Lilly and me in the rain. It took about 30 seconds for her to ask if she could go to the spring dance that started in a couple of hours. There is no holding her back, if she was old enough I would have given her the keys to the car, however she had already arranged for a ride. I did mention to her that she would leave before Vicki even got home and this didn't really seem to be a problem for her. The next few hours were filled with her talking my ear off about school (which I love), picking out the right outfit for the dance and then we practiced dancing to songs completely inappropriate for a school dance while we giggled through Lady GaGa shaking the house. We even took a break to eat dinner, brush teeth and negotiate spending money for the event. Apparently I have taught her how to negotiate "corporate sponsorship" deals pretty well and we worked out a co-op plan for book fair and snacks. (I find out later snacks were free, this girl is no fool)
The weekend was full of friends and running around. We went out to breakfast and the mall on Sunday which is a real treat since we haven't done this in a long time. The rain kept us inside playing a lot of wii, but fun for the times Reagen didn't have a friend over or wasn't visiting someone. Sunday was interrupted by 8 or so methotrexate pills. Reagen was not happy about this but she did it. We had the discussion that this is just the way it is for us (her) and it has to be done. Not easy for her to handle, but she gets it and she got them down in one shot after they were crushed and put into a cherry suspension.
I came down to wake her up this morning and she was already up on her own getting dressed for school. Reagen was in such a good mood. She even said, very loudly "It's another day of life"! Vicki and I just looked at each other like, where does she get this? We had breakfast while Vicki got dressed for work and everyone slipped back into their routine quite easily. We all walked down to the bus (15 minutes early, she couldn't wait) and so we begin the next phase of our lives. It's not perfect, but we are pretty happy with it right now.
Life goes on, let's get on with it!
Wednesday, March 10, 2010 10:32 PM CST
Picking up where she left off…
It’s Vicki here for a change, so I will try to fill Rob’s shoes. I know he has a loyal following ☺. Rob is away on business until tomorrow, and Reagen and my goal for this week was to prepare her for school - start getting back in the routine, gathering up her supplies, digging out her backpack, etc. We have been having a terrific week so far – she is feeling great and in an awesome mood.
Reagen was pretty tired over the weekend, and that lasted into Monday, but all in all, she really came through last week’s round of chemo and steroids great. She and I headed to the clinic on Tuesday for counts as well as for an appointment for her to try a breathing treatment that will take place of an IV med that she needs twice a month, or an oral med that would need to take every day…for the next 18 months roughly. They also did a bone density scan to see if or to what extent the steroids are taking their toll on her. We are waiting the result of that test. As for the breathing treatment, Reagen really was a champ and tried very hard to get through the treatment. The treatment lasts 15 minutes. Last year when she tried it, she made it about 20 seconds. This time, she made it about 7 minutes, so she is getting there. We will try it again in about 3 weeks when we go for her next chemo.
I was just about to say that the only real lingering issue that Reagen has this week is insomnia…..and I look up and there she is, standing next to me (11 pm). She has a few words to say:
This is from Reagen. On Friday march 12th I will be going back to school full day and will be riding the bus home till after Easter.
So that leads me to the highlight of Reagen’s week. We have been going over her class routine, and she has been logging into school a bit more this week, mainly to start to get her ready for the routine. Today, her teacher thought it would be a great idea if Reagen went to school for the book fair, to kind of “break the ice” with everyone. We decided that she would stay there for the remainder of the day, including her after school time with her teacher. She had all of her supplies loaded and was able to move into her desk. When she came home, she said, “It was awesome, I loved it” and proceeded to call Rob and everyone she could to tell them about her day. She said that her teacher and the other kids really wanted her to come back tomorrow, so she is going in around 11:30 for the rest of the day, and decided that she wants to make Friday her first full day back…you can see from her post that she is very excited. Now I am not sure what is causing the insomnia, the steroids or school…..
Oh, and of course she has to start back on Friday……it’s pizza day in the cafeteria☺
Thanks for checking on us!
Love, Reagen, Vicki, Rob and Lilly!
Friday, March 5, 2010 11:05 AM CST
Doing Great...
Getting through these pulses is not easy for Reagen, but she has done great this week. The steroids have not affected her moods bad at all and with the exception of a nap here or there, she has had great energy. It also gives us a chance to do some family stuff since she isn't back to school yet and her counts are good enough to go out in public.
We have been pretty busy since her procedure on Tuesday. After we left the hospital we took her on her Justice trip which we promised while we were in duPont last time. We then made a stop home and headed out to dinner. At dinner Reagen was treated to a most wonderful surprise bumping into her teacher and principal and sat with them for a bit to catch up. It was a bonus to our day for sure.
The last few days have been great with Reagen feeling good and being pretty active. I took her ice skating on Wednesday and then lunch. On Thursday Vicki took her bowling. Today we went out to buy a new wii game for family friday night. We are currently making plans for Saturday too.
We never know how the steroids will affect her so we don't make any plans until the last minute, but she seems to be doing so we just keep rolling with it. We want everyone to know that she is doing great, since you have all been there for the times she has struggled.
Have a great weekend!
Monday, March 1, 2010 3:36 PM CST
Big Milestone...
There really is a lot to write, but I'l condense as much as possible. Reagen is doing great, feeling great and has made the move into the next Phase. Maintenance is much better than what she has been going through the past year. We are excited to hit this mark, but trust me it is no picnic for Reagen as I think you will see after I share some of the details of treatment.
Today she attended a school assembly via video feed and chat (she's not really comfortable yet with people being able to see and hear her). She was even called on and participated with the speaker. Pretty cool stuff and a great way to get her integrated back at school. Speaking of which, if things go well she has a return date scheduled for March 15th. This will be a huge milestone for her and our family so the next couple weeks will be preparing for the return and trying to find a balance between making a big deal of it and making it somewhat normal. I'm sure we will get a lot of support from school and her friends and their parents for this since they have all been behind Reagen from the beginning.
Today Reagen was also told she could discontinue one of her daily meds. Not that big of a deal, but just think about when a kid is sick and they have to take something for a week or 10 days. They are very happy when that is over so you can imagine how tired you get after taking something for more than a year.
Now what is maintenance?
Leukemia works in the blood and the cancer is like a weed. You kill it off initially and then just before it can grow back you kill it again at the root, but before the root grows at all. The cancer is gone, but the treatment has to go on over and over or it will come back stronger each time. During maintenance the body is allowed to recover from the chemo, but not enough for the cancer to return.
Here is what Reagen's schedule will look like from here on out:
1) Tomorrow - Spinal Tap, she will have one of these every three months
2) Tomorrow she starts her pulse - every 4th week Reagen will have to get VIN injected (form of chemo) This will become more painful once she gets her port out because she will have to have this injected in her hand every time.
3) Each "pulse" - Reagen will have to take steroids for five days
4) Each "pulse" - Reagen will have to take a several other meds to treat side effects of the pulse
5) Once a month Reagen will have to do a 30 minute breathing treatment at the hospital that is very unpleasant. She has tried to do this a couple times before but has not been able to tolerate it, so she will have to try again or go back to and injection every two weeks or a daily oral liquid med.
6)Every Sunday - Reagen will have to take 8 methotrexate pills (oral chemo)
7)Every Day - Reagen will have to take another pill (6MP) which is also a form of chemo
There are some other things that will come up and much of the medication she takes will have a cumulative effect. All these meds will take their toll on her and she will be more than ready to be done by May 2011. I won't write much about the daily grind of this in the future for a couple reasons but mostly because she doesn't have an option (as if she ever did) and we will not complain because we realize how lucky we are to have made it here. Luckily she's a girl or she would have to remain in this phase for two years instead of just a little over one.
As I said this is no picnic for her, but she has done it before and she will do this again as it has become part of the fiber of her life. This is all she knows except the 20 months she was off treatment and even that had a fair share of hospital visits and tests etc. When she is 10 she will be done chemo and will have spent 5 years on active treatment.
All that, and we are happy. Maybe a little crazy too. We are strong and ready to start this next part of treatment with a positive outlook and hopes for the future. We now have a schedule and we are already making plans for travel, sleepovers and more travel.
Life is good for the Amands!
PS - Happy Birthday Mom-Mom
Thursday, February 25, 2010 12:35 AM CST
Home...
Yes we are home. Late last night we made our escape and Reagen was really happy about getting out of there. It was a long process packing, organizing, loading and picking up Lilly, but all well worth it. It's always bitter sweet since we leave the people who have been taking care of all of us for the last 8 days. We also leave behind other kids and families that still have to fight to get out not to mention just feel better.
There is nothing about this journey that ever really gives you a happy feeling without some other thought creeping into your consciousness. However we make the best of every good opportunity, that is what we have learned to do and it keeps us sane.
For now Reagen is feeling good and we are home until Monday. Seems like a long time and we'll enjoy being home.
Wednesday, February 24, 2010 11:59 AM CST
GCSF - GCSF -
They made the decision yesterday to give Reagen GCSF. She has had it once before though they don't like to give it to leukemia kids that much. It also is a little painful since they have to put a port in her leg (thigh) that stays there so they can inject the medicine once a day. The medicine stings pretty bad when it goes in too. It's a real party.
The upside of this is that it will help Reagen's white count recover faster. Typically kids that relapse have a difficult time recovering from all the chemo they have had and this helps them recover faster. So far it has worked a little already and her counts are up. She will get another one this afternoon and they will draw labs around diner time to see how fast the GCSF is working.
We are settled in regardless if we head home or not. We have a schedule in place to accommodate work schedules, and the social schedule is dead anyway so we are good at least through the weekend.
Tuesday, February 23, 2010 8:39 AM CST
Yea we get to stay more days...
So much for my medical knowledge. We ain't going nowhere. Reagen's ANC went down to 27 this morning. Nobody really took it that well. I actually took it the best if that's an indication, and Reagen unfortunately took it the worst. I was happy to see the fight in her though and her insistence that she wants to go home. That spark she has drives her to fight everyday so I'm okay with her being pissed off. It took her about 30 minutes to come to grips with the fact that we will be here another couple of days. It also helped that we promised her some shopping when we get out.
Soon after she ordered breakfast she recalled a conversation she overheard about her port being de-accessed and then re-accessed. She is a smart kid, even though I tried to push the conversation to later, she insisted on knowing if it would have to be today, so we told her that yes today was the day we would have to do that. She took it well actually with the promise of a plan that Mom had and more shopping. By the time we leave we will be calling her Paris instead of Reagen.
She looks great and has good energy. No fever or hint of fever and she does have some indicators that her ANC could be rebounding, but we will keep that hope in check. As JayZ says "men lie, women lie but numbers don't", we'll wait for labs before we get excited about going home. Overall we much rather deal with the boredom of being here than any type of fever or other situation that could compromise Reagen's health. We have our priorities straight and at least we are all together and actually feeling good. What's another day or two or three. (Yes, I'm talking myself into acceptance)
Cards
Room 3004
http://www.nemours.org/e-service/e-card.html
Monday, February 22, 2010 7:21 PM CST
Bumping along...
I can't believe we have been in here this long. Reagen has been in a great mood and has done everything asked of her. She is not happy about this and tonight was the first time she was even off the floor for 15 minutes. We "might" get out of here tomorrow.
Reagen's numbers are coming up slowly. She made good progress today and we thought we had a shot and really did not agree with the decision to keep us here. We know the risks, but at that point they seemed minimal so we were candidly pissed they were keeping her. Of course soon after I got over my tantrum Reagen started a low grade fever that creeped up on us. Just enough to shock us into "glad they didn't let us go". I am sure that knowing we left without full buy-in we would have had to turn around and come back for reassurance. As of now though that low grade fever never amounted to anything and currently we are enjoying happy and fever free Reagen. Another night of Olympics, overeating and planning for tomorrow.
We do think we will be out of here tomorrow, but have a contingency plan in place should that not happen. I don't think Reagen's ANC will be great for going anywhere or seeing anyone, but it might at least get us home. Reagen did say last night while she was hooked up to the IV that she is never going to be hooked up to that thing again. I only hope that will be true.
Sunday, February 21, 2010 2:23 PM CST
Slow motion...
Good news is that Reagen is feeling great and with few exceptions you wouldn't even know she was as sick as she is. Her numbers are rebounding slowly and she has not needed any more transfusions. ANC is still too low to leave the hospital, but she is taking it in stride. She has been spending her time doing crafts (ugh) and watching disney (about had it) but she is happy and comfortable and that is what's important. We have our priorities straight and Reagen is #1.
We are not taking it as well as Reagen but realize it's the best thing for now. The walls are closing in just a bit and logistics of work and life are becoming a little bit hard to juggle, but a few more days is better than taking an unnecessary risk. Nothing much else to report here, fun, fun, fun.
Friday, February 19, 2010 11:10 AM CST
Um, wrong direction...
We woke up this morning to the news that Reagen's counts were 12. We both rolled over and went back to sleep not really ready for the news. It was nothing horrible but just disappointing. We would have been happy with a small move forward.
It seems like her fever is staying away. It was still low grade last night, but seems to have turned direction which is a very good sign. She ate a great breakfast and is in a good mood too. That is really the most important thing as long as she stays happy and makes the best of this situation. She knows we will be here for a bit and has taken it in stride.
Life kind of stops when we are here. Work slows down, food in the fridge at home goes bad and normal social life for everyone pretty much goes out the window. We are lucky that we have a private room with two beds and our own bathroom. It makes life bearable but a long stretch from being at home. Hospital food isn't that bad though we will start ordering out soon. Healthy eating and exercise are hard to come by either by way of motivation or lack of availability.
I would update more information, but unless I start describing more of daily life here there isn't much to talk about. We see a resident in the morning and a Dr. in the afternoon. Both have the same story, sit and wait, which we knew already. It's a secure feeling that they don't see you early after rounds, that means you are not a priority, and this is one unit you don't want to be a priority. That means they are worried about something. Now they are being cautious only because if something were to go wrong it could happen fast and I think I have described that before, but cautious is good after this past year.
We can handle another day or two like this until we start clawing at the walls so we SitStrong until Reagen's ANC turns around. TGIF (not)
Thursday, February 18, 2010 5:06 PM CST
Wait Game...
Nothing to do but wait. Reagen is still running a low grade fever, but other than that and sleeping a good amount she is hanging tough. The fever make her a little punky from time to time, but she deals petty good. Her number are still extremely low but as of yet does not need another transfusion. It stinks for her to have to be here, but right now it's the best place so she can get the best care. Usually we are the first one's to say get us out of here, but for now we feel comfortable with the fact that better care is here than at home. That is unusual, so she must still be pretty sick.
She has had spurts of feeling better today for sure. When she is really feeling bad she does not wear her hair. Bur when she asks for it, it's a pretty good sign she is feeling better. After a little breakfast she got dressed and asked to wear it. She also attended school (via video conf.) for a short period today. It didn't last too long as the time was after a long morning for her and she needed to bail out.
Reagen has been doing a lot of crafts and enjoys all the cards she has been getting. Vicki and I have been reading and doing work but we all have been pretty inactive for the most part.
From here on we just have to wait. We don't expect her counts to jump up over night, it will probably be a slow climb until we literally feel like we have to break out of here. We know what to expect and the team is not overly concerned since this is "typical" for kids in Reagen's state of treatment. I guess this last stay is to make sure we remember our entire year of hell and get the most out of it. It will be a good summer for sure, even if Reagen is still on treatment, it shouldn't be anything like this.
Just Chillin.
Wednesday, February 17, 2010 12:10 AM CST
Unexpected visit / stay....
Reagen has just had too much for her little body to handle and she needed to be admitted to the hospital last night. She spiked a fever in the evening and we had to make the trip to get checked in to duPont. She took it pretty good, but was not happy about it. Overall her spirits have been good, but she's tired and just isn't herself. We don't know the specific cause of the fever yet, but it could be low counts, a little dehydrated and the body just saying help. She still has a low grade fever and is resting a good bit of the day so far. She slept pretty good last nigh so we think her body just needs the rest.
Today she will have to get a blood transfusion and more antibiotics in case it is some type of infection. Her ANC is so low she's not allowed out of her room, even on the BBMT floor so that will get old for her fast.
We are all bummed about this to say the least. It's scary to know that your child is sick enough not only to have to go to the hospital but to know that they will be there a few days. I don't know if we have just become accepting of this fact, better prepared to handle it or just numb to the fear. We all went about our business of getting ready, driving down, dropping off the dog and settling into a routine we know like the back of our hands. Reagen didn't even cry.
Now we just have to wait for counts to bounce back and Reagen to heal. She is excited about getting cards so here is the webpage again.
Cards Room 3004
http://www.nemours.org/e-service/e-card.html
Tuesday, February 16, 2010 12:22 AM CST
Not quite there...
We are quickly reminded of how harsh the drugs are and the effect they have on Reagen's body. The same ones that are saving her really put her down from time to time. Reagen has enjoyed a pretty good run considering everything. She was able to enjoy the snow and some fun over the weekend, but back to business yesterday. She had a blood transfusion and chemo yesterday. Her platelets are really low, but they wanted to see if they come back on their own before they transfuse her. She got chemo yesterday too which was the last of this phase. She came home and then back out in the snow.
Today is a little different. She does not have much energy or an appetite. She has been sleeping and laying around most of the morning. She might attend video school today, she asked me to wake her, but I don't know if she will actually be up for it. The build up of the past four weeks of chemo is really hitting her now. The side effects are not immediate but they are cumulative, so now they are just piling on her. It should be the last shock to her cells that hopefully will keep the cancer away along with the next year plus of maintenance.
Reagen heads back to clinic on Thursday for counts and probably another transfusion. Her ANC count is very low now, but she could be bouncing back, you just don't know what's going on in her so we have to get her checked regularly. It's good for her to rest though it bothers me to see her like this. As a parent you can just sit and worry and make sure you are there for her if she needs something and to keep an eye out for anything unusual. That is actually a little difficult sometimes, because everything she is experiencing is unusual for an 8 year old girl.
We just aren't quite there yet. For all of our plans and schedules and moving forward we just end up on hold. It's a fact that we have gotten use to, but it can sometimes feel paralyzing that you can't get anything in your life moving forward. So we wait. Recovery will come and we will resume our lives though all three of us accept and understand that this is our lives.
Tuesday, February 9, 2010 3:38 PM CST
So Close...
Reagen as always has been a trooper the last two days. She spent Sunday tubing and walking up the hill all day and she had hemoglobin numbers that would have put most of us in bed and unable to do anything. Then on Monday she went to have not only a red transfusion, but her platelets were in the teens, so she need to have a second transfusion for that as well. She also received an hour long IV for side effects of all the chemo she has to get every two weeks and she had chemo to boot. She came home late (around 4) after being there since around 10 AM and then she had 2 hours of class with her teacher. She really is amazing.
Today she had to get PEG (double chemo shots in the legs, if you recall). It sucks, no way around it. Painful and a lot of anxiety before, but she was pleasant all morning and only got upset just before the shot. Much screaming during, but I'd scream too. A little American Girl gift to help ease the pain and then we hung out for an hour while they check her vital signs to make sure nothing goes weird. After we got home she was right back to school work, but over the internet with a live video feed from her class. It worked great and she did well. I think it will be a big help getting her re-integrated with her class. I think she will be back with them in a month or so.
She is sooo close right now to being done with this first year of very difficult treatment. Since Christmas it has been really hard on her, but she has had some good times too. Her friends at Sungard have really helped brighten every day for her during this last push. She is always telling a joke or story from one of those letters, every single day she gets one. Thanks guys. From here on out she will probably need a few more transfusions, but nothing she isn't use to and compared to everything they are a non-event. Next week she gets chemo on Tuesday, and then it's just blood work until her counts recover.
This is not over by any means, but we are a hell of a lot closer than we were a year ago. It actually is unbelievable that we are here in many respects.
Friday, February 5, 2010 8:29 AM CST
New Picture...
It was almost one year to the day this picture was taken. It was a simple moment in time, however it is almost the exact moment that Vicki found a little lump in Reagen's neck. Sometimes I don't know why I make myself relive that moment, but it was the last time we had together without thoughts of relapse hanging over us.
That night is so clear in my mind. I remember snow still scattered around and ice crunching under my feet in the driveway while I was on a call walking around. I can remember it just being a cold dark friday night and we had no plans. That was actually a bad thing because all three of us like to have something planned even if the plan was to do nothing. We were all a little testy. I remember saying everyone in the car, we were going out. It was just a simple night for the three of us. We didn't have a dog either.
We went to Ron's School House, where we rarely go, but we wanted to do something different. Reagen won a ball in a claw grab game, but we found out later that it was another older girl who was a neighbor of a good friend of ours that won it for her. However that made her happy and set the tone for a fun simple dinner. We talked about Vicki's next upcoming trip to Paris (she had been doing some international stuff for work, and loved it) we talked about some Adopt a Pig ideas, that are actually coming to fruition now, and Reagen told us about school and we talked about her and I going to the Flyers game for a Valentine date. I took the picture because I just knew it was a great moment. It's weird.
I remember she wouldn't take that headband off, she wore it all the time. Now she is completely smooth, no hair no eyebrows and no need for that headband. The smoothness doesn't bother me, it's just the symbol of her getting better, but it's also a reminder of all she has had to endure this past year. We never had our date to the flyers game and Vicki has not been able to return to Paris. Reagen has not returned to school either except for the Monday after that weekend. I can't reflect much further than that because it takes me to the first moments of blood work and the Dr. visits and that place is still very dark. We knew in our gut when the picture was taken that something was off. Vicki felt even stronger about it, but like the strong Mom and wife she is kept it buried to protect us.
A year later and we can see the maintenance line. Reagen is still doing well, ANC holding on, but she will need blood and platelets on Monday for sure. We are well into treatment and in some ways have put our lives on hold. We have been bolstered by friends and family to get this far and we will make it the rest of the way to get back to normal. Reagen and I will have our date and Vicki will get back to Paris (maybe we'll all go together) and Reagen will beat this again. It just sucks losing that time, it sucks that we have to lean on people and be needy, it sucks that Vicki has to wear so many hats. The pity party is now over and we will return to our regularly scheduled lives. Reagen will go back to school soon and we will follow her example of strength. I'll start taking more pictures too.
Monday, February 1, 2010 8:59 PM EST
Great News...
This is nothing earth shattering, but Reagen is feeling great and it's about time. She has gotten better every day since she left the hospital and her counts are hanging on too. Of course that will change tomorrow when she starts chemo again, but we'll take the little win. We had a quick visit to the clinic to check up and check out.Tomorrow is a spinal tap and then chemo in the clinic, but we get to go home. The next four days she will get chemo at home. But we will be home.
We are all starting to make plans again. Work, school, social and even travel. Of course we are counting on nothing, but laying the ground work to get back to everything we can for now. Even Reagen is asking about different things she will be able to do like school and have friends over. You would think we are talking about a Disney trip when she talks about school the way she lights up sometimes. All of your thoughts, prayers and karma comes rushing to us at times like this and it feels like a huge hug that we held onto during our darkest times but can just start to feel now.
Thursday, January 28, 2010 11:34 AM EST
In the Mix...
Just to start off on the right foot, Reagen is doing well. It was not easy to get past the previous few days, but she did it. Reagen started off Monday night not being able to eat anything after midnight, which is tough for someone coming off steroids who likes snacks in the middle of the night. She went into the SPU and they put her asleep and off she went. They did a spinal tap where they remove fluid (via a needle) from her spine and then replace that exact amount of fluid with chemo. This is done to protect her central nervous system. She slept a good bit after the procedure as they put a little extra something in her anesthesia. When she woke up they gave her another form of chemo and then another chemo. The remainder of the time she is hydrated. Reagen also had to start another (crazy I know) oral chemo that she has to take at night and will have to take every night throughout maintainance. She did good with everything and slept pretty well, which is tough when people are in you room checking beeping machines and changing fluids, taking your blood pressure and your temperature. She doesn't complain and is always very pleasant with the nurses.
The next day she woke up, but with no appetite and with a lot of stomach pain. That led to getting sick and trips to the bathroom and a basin, but I'll save you the details. They gave her some extra nausea medication they use for something called "break through" which is when the nausea breaks through the zofran that was already given. She had another round of chemo and went back to sleep. She really just slept for most of the morning until it was time to go home. Upon picking up Lilly she was awake for about 30 minutes and then slept in the car.
The evening had come with no more stomach pain but instead Reagen had a low grade fever. It did not warrant a call to the Oncology team, but we kept our eye on it all night but it didn't break until this morning. It was literally 1/2 a degree away from us having to head back to the hospital at one point. It immediately brings thoughts of relapse to my head and I think you can actually make yourself crazy if you let you mind wander. Reagen slept pretty much through the morning and woke up to eat a little and we made her drink to make sure she doesn't get dehydrated. During all of this, when we would wake her or for trips to the bathroom she was very pleasant and happy, even making jokes for the short period of time she was awake.
Currently she is fever free and up and about. We want her to rest, but we feel better when we see her acting more normal. I rather see her complaining she is bored or wanting to go play then just sleeping. It's a little selfish I know. Her port is accessed and will remain that way until tomorrow afternoon. A home healthcare nurse will come today and tomorrow to administer chemo and then de-access her port tomorrow.
I know all this might seem like a lot, but all of us are prepared to handle it. Reagen is actually going to have school today with her teacher. Vicki says I don't always put much detail in the posts, but I don't feel like you need to live through this too. Plus it's a lot of writing, I'm still leaving stuff out. We will stay tight the next couple of days and should have a pretty good weekend. This cycle repeats itself next week starting on Monday. Everything except for the hospital stay chemo so when Reagen has her spinal tap we will then head home and the nurses will come here. We may have actually had our last overnight stay in the hospital, and that's a big step, though neither of us will let ourselves enjoy the moment, we are unfortunately not that naive anymore. We'll take the short gains for now and look forward to maintenance.
It's almost been a year.
Monday, January 25, 2010 8:58 PM EST
Last "Big" Push...
Reagen has great numbers and is feeling really good. She has been authorized to move forward with the final four weeks of chemo before she goes into maintenance. Trust me, maintenance is no picnic until 2011, but it will be way better then what she has had to endure this past year. These next four weeks will consist of a couple spinal taps, one or two day hospital stay, home nursing administered chemo, peg shots (last one) and a few oral chemo pills and I.V. pushes. After that she will have two to four weeks of low counts and blood transfusions. She is heading into this phase with higher counts then ever before, so we are hopeful that it will be a rather uneventful phase. I know it sounds like a lot, but for some reason we are all giddy with anticipation to get started. It's an Amand thing, if you're gonna get in a fight, just get to it and throw a punch, and that's where we are and I feel like we're ready.
We are currently packing everything for the hospital for us, the dog and Reagen. (Dog is going to Mom-Mom's) I have a feeling this is one of the last times we will have to do this. I know for a fact we will have to do it again to get her port out or for something down the road, but it just feels like a milestone knowing how close we are to maintenance. It feels like you can breathe a little easier and a weight is being lifted. We are by no means putting our guard down, but you can't walk around all the time worried about "what if" it just drains you. Besides our worst "what if" already happened so we are pretty thick skinned at this point.
We took Reagen out to dinner tonight and bought her some "Chuck Taylors" (she saw them someplace and had to have them). We know counts will drop so it was a good time to go out since she is a little higher now. Plus she has been locked down a good bit and an eight year old needs to get out a little. All she wants to do is go to Chucky Cheese and we can't in good conscience take her. You know the germs in that place, and it's not worth the risk. She asked a bunch of times and said "but I keep seeing it on TV" (thanks PBS) and then she cried. It's so not fair that a kid with cancer can't go to Chucky Cheese because it might kill her. It's not even that great, it just the freedom to be able to go. It will just have to wait, and she has accepted that like she has many of the things during this treatment. So tonight it was Chuck Taylor instead of cheese.
But, it's changing soon and this spring and summer in spite of all the stuff she is still going to have to endure she will have her Chucky and anything else she wants that we can and can't afford. We have already started planning for summer vacations and looking at schedules. Football season is almost over.
Wednesday, January 20, 2010 5:26 PM CST
Missed Counts...
First of all, Reagen is feeling great. Very chatty and more stable getting around, though she is falling every now and then so we have to keep an eye on her. Her numbers are not great, but if we are very careful she can expand her limits a little further then we have allowed since Christmas.
Her counts were not high enough to go into the second part of this phase so we will try again on Monday. This means school will be pushed back again, but she is now well enough to start some school work at home again. This also means we will have to change plans, re-schedule appointments and re-set our calendars but we can start to feel how close we are to another milestone.
So we wait, and we have learned to be patient. It seems so funny at times that Vicki and I have these completely normal conversations about work or news, whatever in the middle of waiting for things at the hospital or on the ride down or back. It's like oh yeah we are in the middle of a shit storm but "can you explain to me rev-rec again", or "are we going to Matt's party". Cancer has not consumed our lives. It's a big part, that's fairly obvious, but it has found it's place or we have found ours.
Keeping up the Karma
Sunday, January 17, 2010 9:32 AM CST
What a difference a year makes...
Reagen is getting back, slowly but back to herself. She has a lot of trouble sleeping and trouble walking, especially on the stairs. She insists it doesn't hurt, but if you saw her you can tell there is now way she isn't in pain. I think she is so used to it now that it seems normal. Her tolerance must be off the charts for anyone let alone and eight year old. Other than the walking she is really feeling a lot better and getting back to herself.
This morning some of our friends are just getting up, still sleeping or in some cases just getting in from a very long night out. This was our case last year from an event we attended in Philadelphia. It was charity related, but for a us it was a celebration of bad times gone away and the kick-off of a new year. Reagen was in full bloom, normal and healthy. We were celebrating being back in the normalcy of the rat race, surrounded by good friends and looking forward to the next year of work, fun and watching Reagen move on with her life past the hell that she had been through. It felt like a second chance at life everyday for us. Everything was good even if it wasn't. I think that as a family, we "got it", we understood to enjoy each day and each moment together or separate and we used this event to kick it off until 4 or 5 am. I can't believe the nightmare came back.
This is a somewhat difficult time of the year to be left alone with our thoughts. As we at times look back on the past year we were so damn happy. Vicki was traveling overseas for work a little and loving it, I was developing new clients and projects for Catalyst and most of all Reagen was fitting into her own friends and routine. We look at pictures of Reagen playing and laughing with her friends and cousins and it breaks my heart to think of what she has been through this past year. As I reflect on the calendar it's almost like reliving the countdown to doomsday.
It had to be early in February where things started to go wrong in her bloodstream that brought the cancer back. I know that there was nothing anyone could have done to stop it. I know that we did nothing wrong the first time during treatment that resulted in this nightmare. There is nowhere to place the blame, this we have accepted. What I do know is that this is our challenge and that if we want to get back to where we were this time last year we are going to have to continue to fight to get there. As parents we need to lead by example to show Reagen that she can get through this and return to living life as opposed to fighting to live. It is not easy all the time and we lean a lot on our friends and family. It has been a strain on our relationships, our careers and our finances. We still think we have it better than a lot of people out there and we realize how fortunate we are everyday. We also know that this process leaves an eternal scar on our hearts that will never heal because we know Reagen will not get her childhood back.
We do see the light at the end of the tunnel. It is dim but getting brighter everyday. We realize that we still have hurdles, but we have a little girl determined to get us through this. She will and we will. I'm looking forward to writing an update in January 2012, if I'm awake or even home yet.
Thursday, January 14, 2010 4:00 PM CST
Slowly getting back...
Reagen stopped steroids yesterday and is very slowly coming back. She has had moments that she says she is feeling great, but she doesn't look like she does. A little trouble walking, but no more morphine and she hasn't been complaining of pain.
Had one of the fastest clinic visits today. Reagen had her port accessed and labs drawn then she slept while they gave her an IV drug for side effects of the chemo. She had some pretty bad stomach pain while we were there, but it seems to have gone away and they checked her out pretty good. Her numbers came back high, but they are from the steroids and empty so they will fall off very quickly. We will still be keeping things close here at home.
Reagen was scheduled to go in Monday, but everyone thought best to give her a break and wait until Wednesday before we see when she can continue with this phase. Wow, two days!
The next few nights will be a little rough to get back into a normal sleep pattern as the steroids drain her system. I'm sure there will be some musical beds in the middle of the night and some late night snaking too. We will still keep a close eye on her for fever and will be ready to head to duPont, though I don't have this hopeful feeling in my gut that we will stay home.
It should be a quiet weekend here slowly bouncing back.
Tuesday, January 12, 2010 8:50 AM CST
Hardest thing ever...
Reagen is hanging in there through this period. This is certainly one of the hardest things to go through as a family, I think that's obvious, but It's even harder to watch because you can't do anything to make it better. I know we have to ride this out and we will come out on top of this wave eventually, but the process sucks. It was bad enough to go through this once, but the second time is worse in some respects. We are better educated and more knowledgeable about cancer and it's treatment and more prepared to help Reagen, but we also know about long term effects of this treatment and that's always hanging over your head as well as the immediate threats that exist. We also know that even if we get to maintenance and then done treatments that cancer can come back, any thoughts of not living with that over our heads was stripped away when Reagen relapsed last February. That is our burden to bear for Reagen and for us there is no end, we have a daughter with cancer and that is what we have have to live with.
I guess once you realize that this is what you have to deal with, you make the best of it and up to now I think we have. Currently it just seems harder not to think about it because it's right in your face. Reag's hair is falling out again (just peach fuzz, but she noticed and said something to Vicki), she is having a good deal of leg pain (we have had to give her morphine) and she can't sleep at night but can't stay awake either. The St. Jude commercials aren't helping either, and we are not really fans of that particular ad campaign.
We have a couple more days of the steroids and probably a week or two for Reagen's body to recover to the point she can finish the final four weeks of this phase. We spend our time staying busy at work trying not to think about too much but ready to be at Reagen's side if and when we can do something for her. There is light at the end of the tunnel and football season is almost over so we know we are close and it gets us through each day.
I know we have have good times ahead, even during treatment, and we know to make the best of those for all of us. Spring should be fantastic and next spring even better, we just need to get there and we will.
Saturday, January 9, 2010 1:34 PM CST
Ok, so we are Home!
Last night was kind of long, but not too bad. I was anticipating Reagen's numbers to be pretty good and was excited we might get out of there this morning. I woke up at 2 am and waited until they drew labs at 4 and then had the results by 6. They came in at 490, just on the cusp. We were ready to go and discussed leaving AMA if we had to. (AMA = Against Medical Advice) The 10 points weren't actually that big a deal, but they are definitely taking the conservative approach with Reagen, which makes us a little concerned so we are keeping a close eye on her. We head back in on Wednesday for a check-up. I finally went to sleep around 6:30 just to make the time go faster, and we got out of there packed and all by 11.
Reagen is feeling pretty much like she did around Christmas, but without the holiday cheer. Her spirits are a little down. She is sleeping a lot and her hemoglobin numbers are dropping so she doesn't have as much energy when she is awake. She will probably need blood product next Wednesday. Reagen will not get any more chemo until her numbers get back to 750, so it will be a week or two before it starts up again. I'll get into the details of the last four weeks of this phase at a later time, but it should be better in some respects than the first four weeks.
Reagen and Lilly were glad to be reunited and it is nice to be home for all of us. Now we finish out the steroids (they go until Wednesday) and keep an eye on Reagen for more fevers or anything else that doesn't seem right. No visitors and no going anyplace for a while. Lockdown has commenced, but we are locked in together at least and at home. We are fortunate to be here so we will make the best of it I'm sure.
Thank you for checking in on Reagen and for everyone who has sent cards, gifts and support our way, we couldn't get through this without you. All those things, big and small lets us know we have a great many people behind us and pulling for Reagen and it means a lot to all of us. Thank you!
I might go take a nap with Reagen now.
Thursday, January 7, 2010 7:35 PM CST
Still here and not happy...
Sorry to say we are still here. Reagen did not take the news well. Her counts are only 100 today so we only had a glimmer of hope to get home. It really does make sense to stay based on what we were told. I may have written about this before when we were in a similar situation, but it was explained to us again why we should stay and we concur with Reagen's doctors. Basically Reagen has to stay because if something were to flare up (fever, cold anything) her situation could "deteriorate" very quickly and as we have been reminded "we have lost kids in an effort to get them home". That's enough for me. One day or one week extra here is not worth losing this kid. Our team here has gotten her this far we are not about to second guess them now.
Reagen tries to understand, but she's only eight and we don't tell her all the details or want to paint a scary picture so I can see why she's pretty upset. The chemo, steroids and other side effect medicines she has to take daily don't really help her feel any better either. Reagen slept a good bit today as I'm sure she will over the next few days. She really wants to take a bath (she takes 3 or more a day when on steroids because it makes her feel better), but the hospital isn't set up so well for that and she has her port accessed which can't get wet. It's difficult at best. She will get through and we'll help as best we can.
So, we sit here and wait. We observe our surroundings and those around us and realize we are very lucky and I can't emphasize that enough.
Enjoy the snow, I at least have my eye on the 5 day but not making any plans.
Wednesday, January 6, 2010 11:11 PM EST
Climbing out and jumping in...
Reagen's counts went up today but only to 161. A strong move forward, but they won't stop antibiotics until she hits 500, which means we don't leave until she hits 500. She has a shot at it, we'll see tomorrow. Reagen made a great leap and was felling pretty good most of the day. Of course she also got to start steroids again and she is getting chemo as we speak so that should knock her back down. God forbid she feels good for too long. Overall we just chilled here at the hospital. Vicki did a bunch of calls and I had a few too in between. The Amands are still running strong and this is during a pretty crappy situation. I can't wait to see what we could accomplish when not going through this. Honestly though I think we do extra stuff to keep us from sitting still and thinking too much, it kinda screws with your head.
I expect Reagen to be out of here in the next two days. She is not going to feel so hot, but it will be nice to be home and more comfortable for her too. Not to mention Lilly will have her girl back and vice versa. Reagen will still have low counts and this round of chemo tonight will make them drop pretty fast once the steroids end next Wednesday. The reality is we could be back in here a week or so from now, but we don't plan that far ahead during this phase, so whatever happens, happens.
Being in here is good sometimes because it really gives you some comfort to know that things get worked out and medicine works. It also gives you perspective into what other people are dealing with. We see some families and say, wow are we lucky. I know I've probably written this before, but there are some really sick kids here, I can't even go into detail because it would break your heart. They are very brave and they fight with everything they have got. Along with them there are exceptional parents that are by their side the entire time.
We are fortunate to have caring doctors and nurses that fight along side us every day. When we leave another family will come in, when Reagen beats this a new family will just start this horrific journey and the people here will be there to help them as they have helped us and the others we see walking the halls sleep deprived and emotionally drained from watching their children fight.
So, I hope we get to go home soon, but I know whether it's next week or next month when we end up here again (and we will, no question) that we will have the support and medical care we need to go home again.
Tuesday, January 5, 2010 6:27 PM CST
Update...
Things are going okay with Reagen. Counts dropped again (down to 36 from 50), but fever is just about gone, just a low grade kind of keeping her down. I think of so many things during the day that I should write, but when I sit down to do it, I find that they don't seem interesting or it's too much information and I don't want to put anything else on your own busy and stressful lives.
We have so much help from our parents, friends, neighbors, co-workers and family it's hard to a say specific thank you for everything that people do for us, big and small. One thing to note is the card writing from Vicki's colleagues at Sungard. Someone writes Reagen a card every single day while she goes through this last hard push. It's very nice for Reagen. She even gets cards on Sunday, I don't know how they do it.
Tomorrow Reagen should be cleared to start chemo and steroids again, but they have not really been leaning towards letting her out of here too soon since her counts are so low, but we'll see. Now we wait and keep Reagen comfortable either doing arts and crafts, just watching TV or taking a nap. (you don't sleep real sound in the hospital) She isn't supposed to leave the room and since she has not been asking you know she isn't feeling so hot.
I know maintenance is still no picnic, getting chemo and steroids once a month and weekly pills on Sunday (maybe as many as 10), but we'll take it over this any day. We can't wait to be done, but we will now be at least 3 days longer. It's a good opportunity for some family time but three of us in one room can only be so much fun. I know your jealous.
Thank you for all of your help and support as well as the wonderful people here at duPont that we count on every day.
Please know Reagen is strong and so are we and we will take care of her.
Monday, January 4, 2010 5:33 AM EST
2010 in the hospital, here we go...
Out of nowhere, 4 am Reagen has a fever so she is on her way to the hospital with Vicki. She has had a little cough, so it could be that and it also could be from breaking a finger nail. Either way, at this stage of treatment it is an automatic overnight in the hospital. Reagen was sad, but understood that we had to go. It's an awful lot for an 8 year old to handle.
We were expecting this would be a pretty good day even though we anticipated very low counts. This would be Reagen's third chemo treatment, along with the last round of steroids then off a week. We don't know what they will decide to do about treatment, we'll have to wait and see after rounds this morning.
I'm cleaning up last minute stuff at home and follow-up logistics for anything we might need at the hospital. I also have Lilly duty and need to drop her at Mom-mom's. I'm sure this is obvious, but we want this to be over so bad. It's just not in the cards for us right now, so be it, but I can't help to think it.
I'll update Monday night after we get settled in and see where this thing is going.
Monday, December 28, 2009 7:38 PM CST
Long, but good clinic visit today. Reagen did her best as usual and finished her last dose of steroids just a few minutes ago. She had two different chemos today as well as blood work, Zofran and another IV drug that takes an hour to transfuse.
She said to me tonight when we got home "I feel 100% better". I asked "better from when, today?" She said "no from Christmas, but now it's over". Kind of a heart breaker for a Dad. She really hasn't been moving around too much and she has been complaining about some stomach pain, so I can't imagine what less than 100% feels like for her. She is a tough kid and inspires me and Vicki every day.
Her numbers were great today, but they will last for only a few more days and then we expect them to tank. We are lucky or unlucky enough to have some specific historical data from this phase so we know what to expect for some areas. No travel plans for New Years for the Amands. This will probably be the first year ever we have been home on New Year's Eve. After that we are probably on lock down to prevent infections etc.
One full week down and seven more to go, but day by day is working for us right now. Reagen should be feeling better the next couple of days so hopefully she can have some fun with her Christmas presents now.
Can't wait for 2012. Happy New Year!
Sunday, December 27, 2009 8:35 AM CST
Quiet Christmas...
We have never had such a quiet Christmas. We've also never had a bad one, I can't say this was bad, but this one wasn't on the top of the list. Reagen is hanging tough, but those steroids and the chemo have hit her pretty hard. She has had some good spurts, but mostly she has been sleeping and taking baths. The baths make he feel more comfortable for some reason. Her skin has been really itchy, but not like dry skin, it's more itchy from the inside, so the bath doesn't actually work but she likes it anyway. The steroids make her skin feel likes it crawling.
She had an up and down Christmas and was happy when she was awake, but very quiet. Even more quiet than she usually is, but happy. She had a great visit from Santa at my Mom's house on Christmas Eve, but not too much energy. It took her hours to open her presents Christmas morning, because she would get tired and take a little nap in between some of them. I think it was around 3 when she finished and then slept for another couple hours. She did do better this round as opposed to the summer when she forgot her name. She did forget at one point in the middle of the night that Santa was coming, but overall not too bad.
I know it really bothered Vicki to see her like this during all the festivities. I have been up and down along with Reagen's mood. I didn't want to post anything earlier because I couldn't be very positive and I didn't want to put this on any of you during the holiday. There really isn't anything you can do for Reags when she is like this. You just have to be there for her and keep her comfortable. It is just such a huge difference for all of us from last year when we had already been through all of this and we all truly appreciated our time together and really had fun. I guess it's also a little weird because it wasn't long after christmas that Reagen relapsed and pictures and other things around us are a constant reminder of that happening.
We only have two more days of steroids and we are hoping Reagen's energy level turns the corner today. She usually gets a little hyper at the end of this pulse. We'll wait and see. We go back to clinic tomorrow for more chemo and labs but nothing too bad in the grand scheme of things. This next round will knock out the peach fuzz Reagen has grown the last four weeks, but it actually itches her when she wears her blond wig so that might make her feel a little better. Next week should be okay with counts and she should feel okay before we start the second pulse of steroids.
Wednesday, December 23, 2009 8:42 AM CST
In the Mix...
Every time Reagen has to go through this it amazes me how quickly the drugs grab a hold of her. It's like a switch is flipped and I wonder where my daughter went. As we get prepared for this we reviewed the posts from last time along with our notes and med schedule. Back in August (August 5th to be exact) the post really paints a time-line of what to expect the next week and it is not real hopeful. If we go by that schedule Reagen will be sleeping through much of christmas. There isn't anything we can do for her except keep her comfortable. I'm so happy we did all the prep we did for christmas so she could enjoy the build-up to the big day.
So far so good right now. Reagen slept well and woke up in a great mood. She is doing her meds like she needs to and overall pleasant. She is very tired and will probably start sleeping a good bit.
This week will be focused on little wins and hour by hour to enjoy our time together. It will be like christmas concentrate and we will jam in what we can for her and probably just keep things kind of mellow.
Monday, December 21, 2009 10:12 PM EST
Game on...
Reagen made counts today, but not by much. We started today with chemo (2 different forms and zofran), spinal tap (chemo again tomorrow morning), steroids (tomorrow start seven days on high dose twice a day) and PEG shots (on christmas eve). I know it sounds horrible and it will make her feel even worse then it sounds, but I know Reagen can get thorough this and we'll do our best to help her fight. I think the christmas holidays will actually help her spirits as opposed to ruining christmas. Going through this really takes the focus off all the stuff that typically distracts you from what is so important.
We have a ton of people pulling for Reagen and us so I know we will make it and be okay.
Wednesday, December 16, 2009 5:07 PM CST
Missed Counts...
Reagen missed counts again. She is just below, but you want to go into this phase strong, so they are holding her off. So much for the planning we did to try and make christmas clear. Oh well, we can second guess ourselves, but it may have been better then starting earlier because she could have ended up getting sick anyway and spending christmas in the hospital.
Her numbers are moving in the right direction and we have been assured that she is not at risk for a relapse. That's all that really matters, we'll make christmas special and fun one way or another.
Now we wait until Monday and go from there. Should be fun to include hospital visits and chemo in our plans. It will make christmas that much more special every year from now on.
Ho, Ho, Ho
Monday, December 14, 2009 5:33 PM CST
Curve Ball...
We are always planning. We know the next steps to all the meds, procedures and entire roadmap of Regen's treatment plan, however you just can't plan everything. Reagen did not make counts today. She was well below where should needs to be to start the next phase of treatment. You would think that with our experience and helping her through this a second time and spending literally years handling the needs of Reagen while going through cancer we would have had this listed as a possibility. We actually did know the possibility was there but really didn't expect it. I guess the little cold she is fighting took everything off those good numbers. I was not in the best of moods anyway today and this took the wind out of me. Vicki and Reagen both were fine with it, though Vicki is a little worried about this now ruining christmas day for Reagen.
We need to go back on Wednesday and there is a an outside chance Reagen can make counts and just finish the steroids before christmas eve, so we'll cross our fingers and see. We just want to get started with this so we can end it. Last time is when Reagen forgot her age and name, so we know what is coming and not looking forward to it especially since we know we have no alternatives for her.
Today was long and not real pleasant once we found out about not making counts,but Reagen did great and didn't complain or whine at all. Most of that was from me unfortunately. I'll admit I'm feeling a little sorry for myself right now, but we'll re-group and get her through it as best as possible. If Reagen makes counts on Wednesday then she will start steroids and have a spinal tap on Thursday. The PEG shots will be moved to Monday and so we begin.
Reagen is doing great and her spirits are good. She knows what to expect for the net eight weeks and had a few questions, but she is focused on getting passed this phase and getting back to school.
I'll update on Wednesday.
Monday, December 7, 2009 12:43 AM CST
One week left...
Reagen is doing great and has been very busy. She is getting the most out of her time off chemo these past couple weeks. It seems like forever since we were in the hospital. We had a great Thanksgiving and a lot of fun around the house. Reagen helped me plan a mini surprise birthday party for Vicki too. She has been a great help. We got our tree on Friday and decorated all weekend. In between she has been able to see some friends and get in a lot of play time. She has also been doing a lot more school work recently. She is getting ready to actually go back to school after this next phase and she will probably miss a bunch of work over the next 8 weeks due to the intensity of the chemo and the effect of the steroids, so this is sort of a mini push to get her ready.
We did get counts checked on Thursday since we didn't have to go to duPont just to keep an eye on things and numbers were good. She has a little cold but is fighting through it. Vicki of course picked it up too but both are now on the mend. Vicki and I would have had a mini panic attack last time Reagen was treated, but we seem to have found a rhythm to match the ebb and flow of cancer treatment. It is just part of our lives now so we have to deal with it and I'm happy that we have been able to do so without too many bumps in the road. We don't want Reagen's life to be wasted dealing with this so we deal with what we have to and then stay as normal as possible. It's been working and I think we are all very lucky right now to have found this groove.
So Reagen has a week left before we start up again. She has five days of school planned this week and Vicki and I are both working a little bit more in anticipation of treatment starting again. The first couple of weeks will be intense. That should match the hustle and bustle of christmas just great. Reagen should be feeling okay for the big day, but we aren't counting on anything yet.
I have a picture on my Calendar of Reagen from last year and she was so happy. Her hair was long and it was the first christmas with no cancer thoughts really since she was three. We had no idea that this would happen again. It's bitter sweet to see her picture because I'm pissed she has to go through this all again, but I'm also happy that we had a great christmas last year and we did so thinking that a relapse was something that happened to other kids, not to her and we enjoyed that care-free attitude. I don't know if that makes sense to you but it's hard to explain without going into hyper detail.
Heading into this week we will keep our fingers crossed that Reagen has enough good numbers to fight this cold and keep her out of the hospital. We will also spend the time getting ready for the christmas push and prepare mentally for next week. I'll update next week when Reagen starts treatment again. Thanks for checking in on us.
Tuesday, November 24, 2009 7:11 AM CST
Giving thanks....
We are one very lucky family for sure this Thanksgiving. This is certainly not the path we would choose to recognize how fortunate we are, but we accept it and we are happy. It's a good opportunity for us to see all the people in all of our lives that really care. When the chips are down you would be surprised at some of the special people who step up and we have been fortunate to have a lot of them do so. We have had an amazing stretch of good health for Reagen and a lot of fun thanks to some great assistance from family and friends. We have enjoyed so much the past seven weeks due to the unconditional support that we receive every day. I can't even get into the details for fear that I will leave some very important part out, but let me tell you we have had a great run.
With that thought in mind we continued that great run today at the hospital. Reagen's numbers are pretty good going into the holiday and we expect to enjoy an old fashioned Amand Thanksgiving at home with two turkeys, lots of celebration and some football too. Reagen will not have to get chemo again for 3 weeks! The treatment plan calls for 2 weeks off, but we were extended an extra week to set up timing that might work better for Reagen during the next phase that goes through Christmas. She again was a real champ at clinic today and she does everything she's asked. She is really holding her counts and she really looks and feels good going into the last couple weeks of this phase.
There will be a big change in store for her when we start back up, but Vicki and I are preparing for it already. I think mentally we will be ready and the holidays will either make that better or worse, but I'm thinking better. Physically we are looking at the specifics of what this did to her back in August and September and trying to plan based on what we know, it's the unknown that you have to be ready for.
However, we have 3 weeks to prepare and enjoy and this week we will just enjoy. We see no sense in worrying about the last DI phase as we know it will be difficult for Reagen there is nothing we can do to stop it from happening. We will focus on the moment and continue to enjoy each day.
Have a Happy Thanksgiving.
Friday, November 13, 2009 11:53 AM CST
Great support gets us through...
You think you know, but you really have no idea how much we depend on our family, friends, work and school friends and all of those friends of friends to help get all of us through this difficult time. Right now Reagen is doing great and we really have been lucky for her to respond so well to treatment. It's a good time to reflect on how lucky we are as a family to have such a great support group. Every little deed is special and helps us in some of our darkest and brightest times during this journey. From the smallest of gestures to the largest, each and every one has it's place in our hearts that gets us to the next day, next week and next phase of treatment and it's a good time to say thank you.
Reagen has had a big win over the last couple of days. First of all counts are good and she did great the last two days getting chemo. She had regular chemo on Wednesday and a spinal tap on Thursday and she was a real trooper. The best part was she has been allowed to discontinue one of her daily and yuckiest tasting meds, we affectionately know as yellow guy. She hated this and we hated giving it to her. Of course it had to be replaced by and IV drug that takes an hour to give her every two weeks, but she is happy to make the trade, and so are we. It's really a much bigger deal than you could imagine and we are so happy for her.
Reagen also went to school today. She was beaming this morning getting ready to go. She only went to get her picture taken, but we (school team) thought it was important for her so she wasn't left out of the year book. The photographer came in early and special arrangements were made so she would not be anywhere near the possibility of H1N1 contact. We had to boogie out of there as the buses showed up to drop off the kids, but we sat in the parking lot and watched every bus unload the kids and she looked for her friends. She was so happy pointing out who she thought was who and which kid rides which bus. She even pointed out a couple of parents dropping off kids from cars or walking. I can't wait for her to be able to go back and get in the groove.
All good for now and no chemo until the 23rd, so we will stay healthy for the next 10 days and wrap this phase up after that treatment. We are well.
Friday, November 6, 2009 8:43 AM CST
Milestone Driven...
We now have a couple milestones past and setting up the next few. It's really the only way to approach this journey. As we get to each appointment, each chemo treatment and every day of taking medicine Reagen is another day down the road with her second battle with cancer. We just check them off, good and bad.
The big news now is that there was a very important meeting the other night...
Miley Cyrus was lucky enough to meet Reagen! It was as quick and fleeting as fifteen minutes of fame, but I think one little girl will remember it forever. Reagen too:) It was a great time had by all. Thanks to an amazing crew of friends and family to put this together. We had more people involved trying to get this meeting than the road crew for the concert.
So, Halloween and Miley Cyrus were the two big milestones we were trying to get through and mission complete. Now next on the agenda Thanksgiving at the Amand's! Reagen loves to have people over and is really looking forward to filling our house with friends and family for Thanksgiving and we have a ton to be thankful for so it's fitting that we host this event. We plan on making this the big holiday and getting our tree early (December 4th, Vicki's birthday) because there is the real possibility Reagen won't be feeling so hot during the actual holidays due to treatment at that time. So a lot of football, turkey and fun on the 26th.
This weekend we are heading down to Avalon to re-charge our batteries. It also keeps H1N1 a little further away since it should be pretty dead down there. So we are locked in for a quiet weekend with Uncle Steve and setting up our next milestone.
Monday, November 2, 2009 5:47 PM EST
This little girl is chugging along...
Little rough start getting out the door today. Reagen just about refused to go to clinic. She softened up, but it took some talking to get her there. She is pretty tired of this stuff and when she gets a break from going it's harder to get her back into going. No one would want to do this, but she came around and actually the rest of the day was a breeze. She giggled her way through most of the day and actually didn't get too bummed that we have to go back tomorrow for the peg shots that hurt so much. We were shocked yet again.
Her numbers came back strong enough to up some of her chemo and keep her progressing through this phase. Her ear infection is gone and overall is really doing well for a kid in her position. After the peg shot she gets tomorrow she will only have one more. I want so badly to tell her that it will be the last one she will EVER get, but back in February I was stripped of that naiveté, and I hesitate to use the words never ever.
Halloween was great and had tons of fun collecting candy. Lilly in tow for a little in her costume, but Lilly was way too excited with all the kids running around, so she went back to help hand out candy. Reagen has not touched a piece of candy yet, but I guess eating it isn't the point.
Numbers being good, she also has the green light for the Miley Cyrus concert on Wednesday. It was a little tricky getting this thing put together, but with the help of some great friends with solid connections we got her there. We are still waiting on a meet and greet backstage, but don't know if that is going to happen. This was Reagen's actual first Make a Wish, but they couldn't do it for her, so we are trying to get it done for her this time, we'll see. Regardless of all the stuff and meeting Miley, we will be together as a family having a great time. I would venture to guess Reagen will still be happier meeting Miley then spending family time together, but so would I if I was and 8 year old little girl.
See ya'll after the show!
Thursday, October 29, 2009 7:40 AM CDT
Mental Health...
What a week away from the hospital will do for your your head is amazing. Everybody feeling pretty good and looking forward to halloween. Of course Reagen couldn't catch a complete break this week, she had to have at least one doctor visit, but it was with her normal pediatrician. On her week off she gets not one but two shots for the flu, the regular flu shot and the H1N1. I'm happy she is protected, but the timing could have been a little better for her.
I know we have a lot of people pulling for us and I wanted to let everyone know Reagen is having a great week and feeling good. We couldn't feel this good without all the support and strength we get from you.
Friday, October 23, 2009 7:56 AM CDT
What a day...
All good just long for some reason. So much cancer talk, it just wears on you and beats you down. All three of us are a little tired but I wanted to let everyone know Reagen is doing great. Her numbers are good and her spirits are strong. She dips now and then, but has been able to stay positive for the most part. The older she gets the more she understands and we think she is starting to resent the fact she has to go through this, not once, but twice. Can't blame her I know Vicki and I resent it.
Good visit at clinic. We had a chance to review her roadmap and got the news that Reagen won't need radiation which is huge for her. The possible late term effects increase greatly when you add in radiation to her treatment plan. We were reassured that our docs keep a close eye on everything and are ready should anything funky happen. It makes a conversation get serious fast when you realize the reality of the situation.
They spotted the potential beginnings of an ear infection, so another daily med will be added to Reagen's list starting today. Nice to know they are on it though and hopefully she'll kick this thing quickly.
We are always asked the question "how is Reagen doing?" It's actually a tough question to answer. It's completely legitimate to ask too, it's what we ask of other families or people every day. You don't want to make anyone feel guilty about being healthy and you don't want pity, at the same time you want to acknowledge all the shit Reagen actually has to go through. Vicki had a great line today which was "she's doing great until she's not". It just sort of emphasizes the position she is in, getting from one day to the next. Reagen is in a mode to just do the next thing, the next med, the next test, the next whatever. It is how we all deal with getting to the end of treatment. We have just under four months before Reagen hits maintenance and we are pushing to get there.
Today counts were great and should stay pretty good for the next week or so. Reagen doesn't have to go back until November 2nd, which seems like a long time, but we'll take it. School 4 days next week, almost normal, and no trips to duPont to interrupt her day. Looking forward to the break. LivingStrong.
Go Reags go!
Friday, October 16, 2009 4:05 PM CDT
Laying it out there...
I don't know how I feel about posting this, but I think it's important and for whatever reason, maybe even personal I need to put it out there.
Last January before Reagen relapsed we went ice skating on a Saturday afternoon. Just the two of us to have fun and to give Vicki some time to get some work done, yes on Saturday, but that's Vicki. For some reason I was mad when we left. Vicki and I were grumbling, I'm sure over something stupid and it stayed with me to the skating rink. For most of the time we were there Reagen was quiet and we skated around in circles. She looked up at me at some point and said "Daddy, why are you mad at me, what did I do". I apologized and explained I wasn't mad at her and realized I didn't really know why I was mad. That pretty much brought me back or at least set me on my way back to enjoying the day, but I wasted a good part of the day and my time with Reagen, just wasted it over nothing, literally. I figured I would make it up to her next time we went skating, no big deal we would go skating next week or month and I moved past it.
A few short weeks later Reagen relapsed. There would be no skating anytime soon and I realized the time that I wasted when we went skating. For all I knew it could have been the last time we skated together. It has haunted me since February and I thought about it all the time. I know I could never make up for it, it was gone a very special moment wasted.
Today with no manipulation I was granted a second chance. Reagen wanted to go skating, it was her idea and I had the time to take her. We actually had a fantastic day. We went skating, had lunch together, cooked chili and talked. While we skated I couldn't help but realize how happy I was to have this second chance. It didn't matter that she hung onto my arm the whole time or didn't want to bend her knees. She wanted to skate her way and that's what we did and we were happy.
I guess the point I'm trying to get across is that I feel so lucky to have had my second chance. I might not have had it ever. I have been given the gift once to enjoy every moment and I forgot about it one stupid day and it ate me up for the last 8 months. I don't want to preach, but if you have the chance to enjoy something or bitch and moan think about how I wasted a chance and don't waste yours.
You don't always get a second chance.
Monday, October 12, 2009 2:45 PM CDT
Back in the Saddle...
Reagen's numbers riding in at 1,500. Not cold or flu fighting numbers, but high enough to get chemo started again today. We got the news and were excited?!?!? It's a twisted world the Amand's live in I must tell you just twisted.
A normal clinic visit as clinic visits go, and Reagen has been in such a great mood and just pleasurable to be around. All weekend we were trying to keep her away from people and even from ourselves since we both felt a little off, like a cold brewing and that really limited her interactions. She was just normal and happy and we really enjoyed being around each other. Once that chemo gets out of her for a while you can see the sparkle come through in those eyes again, and it's not one of the drug induced ones either.
Okay, so what's ahead for Reagen? Today was two different forms of chemo and some IV zofran to keep her from getting sick. Tomorrow will be a spinal tap in the morning and then chemo in her legs in the afternoon. That will suck, but then 10 days until we have to go back. This phase is very much like the one back in May and June, but without the hospital stays. If I recall her numbers were pretty good then, just a pain hanging out at the hospital for four days every two weeks or so.
Reagen is looking forward to Halloween and Thanksgiving and she should be healthy for both so we all have something to look forward to before the next big phase. We are focused on the future, just not too far yet.
Thursday, October 8, 2009 10:30 AM CDT
Counts still too low...
Reagen's counts have not yet rebounded enough for her to start the next phase yet. The good news is she did not need a transfusion and indicators show that her numbers are heading towards recovery. So, we wait. No worries of relapse or anything and this is typical for someone who has had this much chemo pumped into them. Of course this will push school back again, but it will not extend her overall end date of treatment, so if she can stay healthy it's like a week off.
It looks like we will head back on Monday to see if we can proceed.
Thursday, October 1, 2009 8:03 AM CDT
Another transfusion, next phase on hold...
Yesterday was another long day at the clinic and then admitted into the hospital for a blood transfusion. We were home around 8:30 or 9 last night. Reagen did a good job. Her counts have just not rebounded from the chemo so they need to hold off the next round. So she has a week of no chemo, just her regular daily meds. It will be a nice break for her, but as always bitter sweet since it will extend her treatment one more week, which means she'll be out of school one more week etc, etc.
Yesterday was tough in a lot of ways going to the clinic. I think we are all pretty tired of this but we know we have a lot more to still get done so that light at the end of the tunnel is pretty dim. We also found out that a boy we see in clinic from time to time died last week. The stark reality of what is going on with Reagen and all around us at the hospital slaps you in the face when you are not expecting it. The upbeat mood you force yourself into gets drained pretty quickly and positive thoughts are hard to come by. Let's just say we all needed a good nights sleep to re-charge our batteries and emotions. Seems as though we need to do that to keep going, but we know how lucky we are, it really could be a lot worse and that helps us to stay motivated.
Reagen woke up today as happy as can be, which makes me and Vicki happy too. It looks like a Daddy Daughter Day working on homework, and hanging out. Vicki is taking advantage to get work done, go figure, and then we will switch off tomorrow. Reagen will have school tomorrow, so Vicki will be able to work from home an be reasonably productive . Reagen was up and ready today early and we had to go to the bus stop on this chilly morning. It just cracks me up when we rush to get to a bus that she isn't getting on but obviously I can't say no. Picture her, me and the dog on the golf cart saying goodbye to Cooper and waving, you just can't help but giggle.
Friday, September 25, 2009 6:56 AM CDT
Not there yet...
Reagen is not over the hump yet. Clinic visit went well yesterday with no blood transfusions and Reagen feeling pretty good. Her ANC is very low, so low we are a little concerned that it could put her in the hospital if it doesn't bounce back. So far so good, last night was ok and she has held off a temperature up until now. If she can get through the day I think she will be in the clear. We'll still plan a quiet weekend at home regardless.
Vicki has a busy day at work and Reagen and I have homework and Daddy work we are going to do together. Reagen will also have school starting at 3:30, so it will be quiet but busy here. We thought she would have bounced back a lot stronger by now, but it hasn't happened yet. We think a couple more days should do it for her, but we'll be keeping a close eye on her to make sure.
Have a great weekend.
Wednesday, September 23, 2009 8:25 AM CDT
Feeling better...
Reagen is bouncing back. Counts are still a little low, but her spirits are high. She and I went to the hospital yesterday to get a little blood-work and a transfusion. She was tired and ended up falling asleep after they accessed her port. She slept the entire time (about 2 hours) and woke up re-energized.
Today is an off day for Reagen with school in the afternoon and no chemo. Tomorrow is a trip to the oncology clinic for more blood-work and the last chemo of this phase. We are hoping for decent counts heading into the weekend and a non-eventful clinic visit.
Next week starts another 8 week phase, but it should be better than this last one. It should also give Reagen a little break so her body can recover and get ready for the last phase before maintenance. The first week is a little rough for her, but then gets into a rhythm that isn't too bad (relative). I won't go into details now, we are just going to enjoy her feeling better and get in and out tomorrow and focus on a great family weekend.
No news is good news from this site for the next five or six days. Thanks for checking in on us.
Friday, September 18, 2009 9:18 AM CDT
Extra Long Day...
Well for everything that went right on Tuesday, Reagen had a rough run yesterday. Started off with her finding out all her counts were down and she needed 3 different blood transfusions and her chemo. We ended up our day starting at 11 AM and getting home a little after 9 PM. We actually had to get admitted to the floor because the last 2 units of blood would take a while to get done and the clinic closes around 5. To top it off she started getting sick on the ride home and had two more visits with the toilet by midnight. Reagen also had really bad headaches because her hemoglobin was so low. I knew it hurt when she asked for tylenol. That along with the first unit of red seemed to help a lot. Reagen did perk up a little after that to do some math flash cards for a test she has next week. She was very animated, loud and funny, but that was only for a couple of hours.
All she really wanted was a trip to Justice that Vicki and I promised her since she had to get the peg shots. By the time we got close she didn't feel like going in. We really didn't want to go shopping either because we were a little worried about her counts but we were going to make her wear a mask if it was crowded and she agreed.
Vicki was great as usual at comforting Reagen through yesterday's long and uncomfortable process. Reagen had a bunch a bleeding after one of the peg shots and when they de-accessed her port. This was due to her platelet count being low, but it's not fun for anyone to say the least, especially after such a long day.
I don't really know what to write. We are tired of watching her go through this. We don't really have a choice to do anything different, so we just do what any parent would do and make the best of it and keep Reagen as comfortable as possible. At least we didn't have to stay over night and Reagen is still able to be home, so we look on that bright side. We know that we can power through this, but we do sometimes worry at what cost. Days like yesterday take their toll on all of us, but Reagen is the one we worry about most. The only place to go from here is up. We are looking at about 17 more weeks until Reagen hits maintenance. We can almost see the light at the end of the tunnel, but right now it's still a little dark.
Tuesday, September 15, 2009 3:03 PM CDT
Staying Strong
Reagen had some low counts on Sunday so we had to postpone the school visit, but Reags took it in stride. She had school at home and was really excited. She works hard, but since she likes it, it doesn't seem that hard for her. It's really one of the high points of her day.
She actually enjoys homework too. Don't get me wrong, she doesn't beg to do it, but she really doesn't complain. We had to go to clinic today and while getting a blood transfusion she was working on her assignment. Nurses in there getting blood pressure and moving her line, she just works away. I had to draw a few lines so she could write straight, but other than that she does it on her own.
She is really good at the clinic. Today Vicki had to go to work and Reags and me just did it on our own. She was totally cool with everything from getting her port accessed to staying there alone while I went down to grab her some lunch at the cafe. She was totally chill the whole time like we were just hanging out. We really are proud of her. Her counts are up too, so that gave us some good news to be happy about. We also got some other results that were positive regarding her glucose numbers that were so crazy the other week. Without going into too much detail the results basically say that she does not have diabetes at this time.
Looks like we are going to try school tomorrow if the schedule works. Thursday will be clinic for two chemos including the simultaneous leg shots. That will suck, but the nurses are really good. She might need another transfusion too, but that should be it until the next week.
Things are good, really. I know you probably read this and think WTF, but when you are in this situation and you are out of the hospital or don't have the port accessed, counts are good and find out that you don't have diabetes, it's a good day. The biggest thing is being around Reagen and she is all smiles and giggles, it's hard to be in a bad mood or sad. It's crazy I know and I wouldn't believe it if it was someone else.
Saturday, September 12, 2009 9:45 AM CDT
Feeling good...
Reagen is feeling pretty good right now. We are expecting her counts to drop, but for now she is holding on well. We came right from the beach to the clinic and things went pretty good. A couple snags, one with her port and had to get a blood transfusion, but overall we got in and out Wednesday and just a little longer after her spinal tap on Thursday. Both days were long for all of us, but we got to come home each day which is nice.
The rain is well timed for Reagen since she has to keep her port in through Sunday. No outside stuff to do so it doesn't keep her from doing too much. Weekend will let me and Vicki catch up on some work and house stuff. Reagen will get her last chemo at home tomorrow and labs drawn.
If her numbers come back okay she can go to school on Monday after all the other kids leave. It will be good for to see her desk, meet her teacher and start her school work. We think it will help keep her connected and let her know she has a place in class. This will hopefully help her with her transition back to school. It will only be the one day and maybe a special occasion here or there, because for the most part her teacher will be coming to our house, but it's a nice switch for her.
She has been down to the bus stop to watch her friend Cooper get on the bus and wants to go down everyday. Now we rush to get down to the bus and then all walk back up the driveway together. It's kind of funny, not really normal, but normal for us. We'll take anything we can get right now.
Thanks for checking in on us.
Wednesday, September 9, 2009 7:58 AM CDT
Back to school...
School has always been a source of security and normalcy for our entire family. Back on Wednesday, September 13, 2006 it was Reagen's first day of school ever. It was at a time when we were turning the corner and getting back to normal. Unfortunately this year Reagen could not get on the bus. She was really excited to go to school with our neighbor who started kindergarten yesterday. Since she has had a tough past few weeks we decided, with a little prodding from Reagen, to take her to Avalon for the first few days of school. It was a great decision for everyone. I can tell you there was at least one family who really didn't mind the weather and was as happy as if the sun was shining the entire time.
We head back to the clinic today and then in the hospital tomorrow for a spinal tap and to start chemo that will continue through Sunday. We will be at home Thursday afternoon and through the weekend with home care nurses coming to the house.
Reagen officially starts her school work on Monday, though she has been working on some homework down here. She is taking it really well and is excited to go in and see her desk and locker and meet her teacher. She will do this after the other kids leave, but it's a start. She will continue her schedule at home like last year until she is in her maintenance phase which will be in January or February. Some of our best family time has always been getting on the bus. Not every day was perfect, but for the most part we did it together and really enjoyed that little bit of time together. We will miss our family walks down the driveway for the bus, but we'll get back there soon.
Friday, September 4, 2009 8:02 AM CDT
Chemo, chemo, chemo...
Still doing well with a good attitude. We came into the hospital yesterday for spinal tap and chemo in pretty good shape. Things are still good though we have a had a couple bumps in the road. Reagen had a little difficulty with her anesthesia yesterday, but was better when it cleared her system by the afternoon. It was a little rough on her until then. Then her blood sugar went really high with no explanation. That made the docs hold one of her chemo treatments so it actually bought us another day in the hospital. They have gotten her glucose numbers under control, but they were really high and climbing yesterday. By late last night they were coming down and by this morning almost normal. It looks like they will give her her chemo this morning, but she has to stay here 24 hours after that for hydration. Sometimes the steroids can cause temporary diabetes. Last night they were starting to discuss insulin shots, but it never went that far, but it is common in some kids to develop diabetes. It's crazy, enough is enough for these kids.
Fortunately, it looks like Reagen was spared this issue for now and we are happy to be moving on. Reagen will have to keep her port accessed through the weekend so home care nurses can give her chemo on Saturday and Sunday. We are planning a quiet weekend in the hospital until tomorrow morning and then just hanging at home.
Including her spinal tap yesterday she will have had six (6) rounds of chemo this weekend and that does not include the oral chemo she starts today that will last for two weeks. Happy Labor Day!
Cards Room 3008
http://www.nemours.org/e-service/e-card.html
We are looking to make the best of today at the hospital and hopefully our biggest problem will be fighting Reagen's boredom. I'm okay with that. Looking forward to getting out of here and getting home too, but mostly just glad Reagen is feeling well and in a good mood.
Don't forget Jerry's kids this weekend.
Tuesday, September 1, 2009 8:47 PM CDT
Short and sweet...
Just a note to let everyone know Reagen is feeling really good tonight. She has been dancing and in such a great mood I wanted to share it with you. She also found out a little information about school an that made her even happier.
Nothing big, just a happy moment I wanted everyone who cares about her so much to know about. These moments are so important make sure you cherish yours too.
Be Well
Sunday, August 30, 2009 8:44 AM CDT
Home and hanging...
We did go home on Wednesday and are still here. Reagen is feeling pretty good. She is still a kid going through chemo, but she is doing as well as she can at this point. It's nice to be home regardless.
Vicki and I have been switching off to catch up on work and things in life just in general. We are just hanging around until Wednesday when we have to head back to duPont, but I think the down time is god for all of us. Of course Reagen gets bored pretty quick, and down time still seems pretty busy for Vicki with work and everything she does here at home.
We are good and gearing up for the next week of this fight. As long as we can keep on schedule and keep Reagen healthy, we will be okay, everything will get done when it needs to one way or another.
Thanks for checking in on Reagen.
Wednesday, August 26, 2009 11:26 AM CDT
Making the turn...
Seems like things are getting straightened out. Reagen's numbers have recovered quickly and pain and fever have been almost all gone. She had to have some scans done to check her pancreas and those results came back negative.
We did discuss changing up some of Reagen's therapy, but there doesn't seem to be much wiggle room. In a case of relapse ALL they don't want to change things up or skip anything since another relapse could be really really bad for Reagen. It seems to be one of those things you have to tough it out through even though there are still some serious risks associated with the treatment. It's easy for them to say that, but Reagen is the one who has to go through it and endure all the pain and the risks.
We have discussed going home, TODAY! We are not getting our hopes up yet, but we are trying to work out logistics for getting treatment back on track as best as possible for Reagen. If things work out we would go home today and come back next Wednesday and then be here Thursday and Friday with a nurse coming to the house over the weekend to administer chemo at home.
Reagen has really done everything asked of her, and it hasn't been easy. We give the team here a lot of credit for getting her better, but Reagen really deserves most of the credit. She is the one who is pushed to get better, and she responds every time. This little girl has more guts, drive and stamina then anyone I know, including some pretty tough adults.
Hoping to see Lilly by tonight.
Monday, August 24, 2009 2:41 PM CDT
Reagen in the hospital...
I haven't updated, because I just didn't feel like it, but I know there are a lot of people who are pulling for Reagen and us so I think that is important enough to keep everyone informed. Reagen is still having a rough time of it. Fevers and a lot of pain from time to time to sum it up. I don't have the energy to explain the details, but it's an uncomfortable time for her to say the least.
We are working with the team at duPont to make her comfortable and get her back on her feet, literally. Maybe starting physical therapy today. She really misses Lilly and is not comfortable unless she has morphine. She had a blood transfusion as soon as we got here about 11:30 PM on Saturday. She does have a little more energy, but the rest of her body is not cooperating.
Chemo will probably be pushed back a week, but we think she'll need that time to rest and get her little body ready for the next round of chemo.
We are in room 3005 if you want to send her a card. I'll update as she gets better, hoping to be home by Friday, but right now we have no plan to leave.
Cards
http://www.nemours.org/e-service/e-card.html
Wednesday, August 19, 2009 8:37 PM est
This is difficult...
Reagen is hanging in there. This is more difficult then we remember and Reagen is having a rough time of things. The pony tail is officially gone and Reagen has taken to her blond wig for public appearances for the moment. I don't think that will last, but it's comforting for her for the time being. She is very achy and seems uncomfortable overall. She does not have much energy, but she can't really sleep peacefully. TV and movies are not a good option either as it seems hard for her to focus on anything for more than 5 or 10 minutes. She has some mouth sores (common side effect) which led to morphine and a hospital stay the first time around. So far, so good for now. (cross your fingers)
Vicki and I were prepared for this, but you are never really prepared to watch your daughter suffer through so much. This is the side of treatment most people don't see except those that are very close to the situation. We are trying to keep Reagen as comfortable as possible, and it seems Mom does the trick much better then Dad. It's just one more thing Vicki has on her plate, but she accepts it without question or complaint.
We are so very proud of Reagen and how she handles all this. She is sooooooo strong, you couldn't believe it. There is not a soccer goal or an academic achievement that will ever make us more proud of her. She was sad about losing her pony tail, but in the shower tonight she told me "one good thing is I don't have to dry my hair", it breaks your heart and warms it at the same time.
Her numbers are holding and we are keeping a close eye on her temperature. In the back of our minds we expect a trip to the hospital though we move ahead with a semi-normal schedule. If it happens it will be at 3 AM, I'm sure.
With all of this happening in many ways we still consider ourselves lucky. We have strong focus and a tight grip on each other. We understand what is real and what is important. Our drama is real and not something we have manufactured or pulled from the media. (example - some lady crying because she is an Eagles fan and they picked up Michael Vick, please, get a grip) We could be in a situation where we are in the hospital, or worse we didn't know how to treat Reagen's cancer. We are lucky because we know what we have to do to help Reagen beat this thing. We also know how happy the other side is, and we have the other side in front of us, there are many families who won't have that opportunity. I know this post has a little gloom in it, but so does this treatment for Reagen. I also know that I will be posting great news throughout her treatment and knowing where we came from will make that even better.
We love you Reagen!
Mom & Dad
and Lilly (I didn't forget)
Monday, August 17, 2009 1:08 PM CDT
Fighting through...
Reagen is fighting through this phase. She has been asleep most of the weekend with spurts where she tries to play, or just watch TV. She can't focus too well, so it's just as well she sleeps it off, but a week is a long time to sleep. She has had some trouble getting her pills swallowed, but keeps going back for more because she has to.
Today Vicki took her to get labs and we will get the results tomorrow morning. We are hoping they have jumped up a bit, so when she is feeling better this weekend she can go out and do stuff. Lilly has been keeping her company and I think she's a real comfort to Reagen. Vicki and I are switching off and on to stay with her and still get some work done this week, but all in all doing well.
Reagen has until Thursday morning and then she is done with the steroids for 12 weeks. She will still have a bunch of other chemo in there, but the steroids have one the most noticeable effects on her.
The pony tail she has held onto is quickly shrinking. We hope she takes the departure in stride as she has with everything else for the most part. It's just the one thing a little girl can hold onto and she has really liked having it and made her feel normal. I don't actually know who is stressed about it more, but we knew it was coming out and know that within days it will probably be gone. One more sign that the chemo is working and we'll be rid of this treatment once and for all.
Friday, August 14, 2009 9:45 AM EST
Big difference...
Reagen had chemo yesterday and started high dose steroids. She was leaning a little on the warm side (99.7), but not considered a temperature so we were able to get her chemo and go home. Her numbers are low, only 200, and they seem to match her mood too. You can tell she starts feeling bad when when her counts drop and the chemo doesn't help that. She has had a couple spurts of energy, but they don't last long and she is sleeping a lot. I rather see her sleep through this week then be uncomfortable, but it's still difficult for us to watch.
We don't have to go back to clinic at all next week, but Reagen does need to get blood work at least twice to keep an eye on her counts. They want to see if she might need a transfusion and just keep a close watch on everything during this period. If she gets any type of infection or temperature, we will have to have her admitted to duPont, so we will have a close eye on her the next two weeks.
We are really happy that we took advantage of the weekend in Avalon last week. It's just such a big swing for her, it stinks. It's a roller coaster with no thrills.
We're hanging in there.
Tuesday, August 11, 2009 10:19 AM CDT
Feeling better, back to normal, sort of....
Reagen is back to herself for the most part. She is currently spending a lot of time with her cousins and feeling pretty good. Over the weekend she started coming back to her old self. We made a quick trip to Avalon to hang with Uncle Steve, Tina, Jack and Rachel and it seemed to work out well for all of us.
This week Reagen has time to play and hang out until Thursday. She will have two chemos on Thursday at the clinic and start the high dose steroids again. We don't expect it to be as bad as last time, but we don't don't expect a walk in the park either. We are preparing as best we can for the weekend and next week. Vicki is putting in extra time in work to make up for time she might miss next week.
After this Thursday and then next Wednesday (18th), when Reagen finishes steroids, she will have a short break from chemo until the 27th so we hope it will give her body a little time to heal and we are hopeful she feels pretty good. We do expect her counts to drop and we could go into lockdown at any point so we are trying to make the most of it now, hence the quick trip to Avalon over the weekend.
I hope these updates provide the type of information everyone is looking for. The subject matter could go about ten different directions, but I try to keep it focused and not too detailed, which is hard for someone like me. We are doing okay and fighting to get through this. We try not to wish the time away, but we are looking forward to this being over and getting back to the happily ever after we were interrupted from in February.
Wednesday, August 5, 2009 2:14 PM CDT
Tough week for Reagen...
Everything always seems so easy on paper doesn't it? The plan should have been pretty simple, but cancer doesn't always work according to plan. Last Wednesday we started and things went pretty good. Numbers were good and Reagen did well with two different chemos that day. Thursday went off well too when she went in for a spinal tap and chemo at the same time she started the heavy doses of steroids. Reagen was feeling pretty good but then ended up taking a long nap Thursday afternoon. By Friday she was sleeping quite a bit, but made it out to dinner but ended up sleeping through most of it. Saturday was more of the same, but Sunday was the day it really hit her.
Sunday night was actually pretty bad for her and pretty disturbing for me and Vicki. Reagen could not remember her age, where she lived or a lot of other things. She couldn't sleep either, but just laid there and kind of moaned. We were on the verge of taking her to the E.R. about 3 am, but decided to give it a little time. We had seen some of this before, but it's scary to watch. She was still foggy Monday morning and we were planning on taking her in to duPont if things didn't clear by the afternoon. She slept very peacefully and then started coming around slowly. We are told that the spinal tap along with all the other chemo can have this temporary effect on her brain where she can't process the information from her brain to her verbal output. It's just not cool even if it is temporary and it is unsettling to see.
I was going to update the sight on Sunday or Monday, but the feeling I had was a little too scared and emotional to write about it. I think I would have panicked some people and we know everyone has their own stuff on their plate. It's better to wait and gain a little perspective before you put that on anyone. Now things seem more in focus with a clear plan of attack again.
Reagen is still not back to herself, but much, much better then she was. We had clinic yesterday and she didn't even fight when we told her she had to get shots in her leg. This is the one that is so painful and both legs are done at the same time. We were a little sad that she didn't fight us on this because she just seems so clobbered by all this chemo they are pumping into her. She was brave when they did it and we ended up having a very pleasant afternoon together.
Tomorrow is the last day of steroids. She gets a seven day break from them and then she starts again for another seven. Reagen will also have to go to clinic to get labs drawn and chemo again tomorrow. It never stops. We knew this would be rough, and we prepared for it as best we could, but it's pretty tough getting through it, maybe a little more than we thought.
Reagen has been great though all this and she is a real fighter, just knocked a little silly right now, but she'll push on and Vicki and I will help every way we can. Currently we owe her a Justice shopping day and she got another outfit out of us yesterday when she had to get the leg shots. Oh well, you do what you have to and what you can to make it a little easier on her. I may be taking a job at Justice for the discounts if this keeps up much longer:)
The golf cart has come in handy just to get her out of the house, you just need to make sure you hold onto her around corners. Other than that and the hospital she hasn't been up for too much more. After tomorrow we get seven a seven day break so I hope Reagen is feeling well enough to do something fun during that period.
We're good, no worries. We are going to power through this. 2011 is just around the corner, no?
Be well, be lucky
Wednesday, July 29, 2009 9:11 PM est
Well well...
Went to the clinic today and we are a go for the next phase of treatment. Numbers are good heading in. It feels like standing on the edge of a cliff for a high dive. You know things will work out okay, but the first step to leap is a little scary. We will look forward to hitting the water and then coming up for air in about 8 weeks.
Today Reagen had to have two different forms of chemo after a healthy dose of zofran to keep her from getting sick. It's kind of a surreal setting watching the nurses putting on gowns and gloves just to handle the plastic syringes and then they pump it right into her port. She handled it like a champ though. Tomorrow we start steroids and all the other fun meds that go with it, but we are prepared for the next seven days and hoping for the best.
Reagen's counts should hang on until about the third week of this phase and then all bets are off. We should be able to stay out of the hospital, but we are always nervous. H1N1 does not make things any better, but we are trying not to buy into the paranoia of the media. Until they post it on ESPN we should be okay.
We still have not approached her about the pony tail she is hanging on to. This round of chemo should take care of that pretty quick and it never seems the right moment to talk to her about it. We know she is going to be crushed and neither of us expects her to wear the wig. We'll get through it, but this is something we are not looking forward to, even though we know it is a part of the healing process. She's just a little girl and she doesn't understand why this has to happen and we can't come up with an answer that is good enough. Just kind of a helpless feeling.
Reagen is already bugging us about getting ready for school. She has reviewed her 3rd grade supply list many times over and we may have some shopping to do soon. She doesn't have a new pencil case or school bag etc, etc. I bet I can find 5 of each if I knew where to look.
All in all we are strong heading into this. Vicki is busy with work and helping with the charity and everything else she does, which seems to be everything. I am keeping distracted with work and the charity and taking a deep breath as we get this phase going. Six months of chemo has taken its toll on Reags and I'm sure a little on me and Vicki. I could write a lot more about this, but why bitch, we are half way to the maintenance phase. When we get through this then May 2011 is just around the corner.
LiveStrong!
Tuesday, July 21, 2009 5:02 PM est
Home sweet home...
Reagen is doing great. We made the game and fireworks. We are all settling back into somewhat of a routine and our schedules. We should be home for a good bit now and I have actually put my weekend bag away.
Reagen had labs yesterday and numbers are good. We will have to get blood work done again on Thursday and keep a close watch on them to avoid any unplanned visits, but that is better than a surprise drop and infection.
We will be clear from appointments until next Wednesday and Thursday, but that should be just a quick in and out (relative to to 4 days) probably 3-4 hours at the clinic each day.
Not really looking too far past next week, this next phase will be tough so we don't want to rush into it, we'll just enjoy our "normal" time together while we can. Until we update assume our little girl is happy and hanging out.
Thursday, July 16, 2009 10:28 PM est
Doing well...
We came in on Wednesday, a day early. We are trying to get Reagen out in time to go to a Reading Phillies game on Saturday night that we booked with friends well before her relapse. It seems like such a long time ago. I honestly don't really know how I feel about going. I'm glad Reagen feels well enough to go but it's a lot different then how great she was feeling months ago and I really miss that. I'm rambling I know.
Reagen is doing great in here and continues to do everything asked of her. She had one little problem with her line that was a little scary, but the staff here at duPont was on it fast. Problem solved. She has been spending her days with crafts and playing twister. Yes, with her IV pole, right hand red etc. You had to see it.
Reagen had a special visitor who brought her lunch today. The one and only Mrs. Ryan! (her teacher) Great to see them together. I can't remember any of my teachers that would reach out to me like this, even if I was sick, not to mention there aren't any I'd even want to see. They really have a great relationship.
Looks like we'll be here until Friday night or Saturday morning. If counts are up we can go to the game. Right now we're still 50/50 because Reagen's counts were cut in half from yesterday until today. She is still at 910 which will be good enough, but we'll have to wait and see.
Reagen will get a nice break after this until the next phase starts in about two weeks so we should be enjoying the heat and humidity at home.
Monday, July 13, 2009 12:41 AM CDT
Happy Birthday Reagen!
Happy to be home...
All home and doing well. It wasn't the best planned birthday party, but it was a lot of fun. Reagen had a blast and we had a pretty traditional barbeque. I don't think we are totally recovered from the hospital stay. Everyone's sleep pattern is a little off still. Vicki has been working a bunch in between getting ready for Reagen's party but has done a pretty amazing job with everything.
Lilly is happy to be home with Reagen and vice versa. Today is a Gr8 eighth birthday for Reagen, but not official until about 6:30 PM. I can't believe that was eight years ago today. Man, does time fly.
We are about a week away from being done with this phase. We head back to the hospital on Thursday for another 3 - 4 day stay and then finished with this part. Reagen will get about a week break and then we start a phase called delayed intensification. This is the most intense round of chemo she will get. It will last eight weeks.
The schedule looks like this
Next week starts delayed intensification
Then eight weeks of something similar to what she is finishing up this week but without the hospital stays.
Finally eight more weeks of delayed intensification before she heads into monthly chemo for 12 months.
She looks great now and should blow through this last round of chemo. Just one more thing to check off and get her finished.
Enjoy the nice weather we are watching the forecast.
Friday, July 10, 2009 9:02 AM CDT
Heading home...
It's not 100% but we are heading home today. Reagen's ANC jumped up from 150 to 1,500. The GCSF definitely did the job, but not without side effects. Reagen had a lot of bone pain in her lower back. The reason is the GCSF tricks the bone marrow into producing very fast and this causes pain in the legs and lower back or any large bones where the marrow is produced. The pain kept her awake most of the night and she really didn't get much sleep.
We have not gotten official word from the docs yet, but we understand the numbers well enough to know we are set to roll. Now we'll bug them for our discharge so we can get out of here before tonight.
We realize how lucky we are by just looking around us and realizing that we are leaving a floor and hospital full of sick kids behind us as we head home. We try to point it out to Reagen without making her scared or making he feel like what she is going through is no cake walk either. Some kids get an infection like hers and end up in the ICU and it can get pretty scary. We are lucky she didn't end up there and Reagen really helps herself get better. Reagen is a fighter, you can just see it in her and she works hard to feel better and she does what she has to in order to beat this.
Next week, we'll be back in the hospital for chemo and that will be the last of this phase. We probably will head back in on Wednesday, but we'll all be glad to get in and get it over.
We'll head home today with a couple extra meds but it's better then being here. Reagen is excited to spend a birthday weekend at home. We are excited for her and for the fact that here numbers are high enough to go home with limited restrictions. It will be nice for everyone to sleep in our own beds and see Lilly and just be almost normal. It's funny how something as simple as sleeping in your own bed becomes so important and how you can really appreciate it. It's probably something you typically don't think about, I know I rarely do, but tonight I will not take it for granted. Eventually I will and that's the way it should be, but not tonight.
This weekend we will enjoy our last with a 7 year old and looking forward to a great 8.
Wednesday, July 8, 2009 1:33 AM est
New Twist...
Reagen's ANC has actually dropped today. She is down to 30 from a high of 60 yesterday. She did hold all of her blood from the previous infusions, so she will not have get that done at least.
Since her counts have not responded they want to give Reagen something called GCSF. This will help her counts respond faster. They try to avoid this when they can but the alternative would be a 7 - 10 day hospital stay and that would also impact her chemo schedule. The downside to this treatment is that Reagen will need to have a mini, temporary port put in her leg. That port can stay there for 7 days. After the port is in she won't have to get a needle, but the medicine does sting when it's administered. This will be once a day until counts rebound. We hope that she will only need 3 - 4 days of this so we can get home for her birthday.
This is not fun for anyone and the walls are slowly closing in. I still feel pretty lucky though considering some of the company we keep here on 3A. There are some kids that are here for weeks and months and can't even leave their room. They are also very sick and have a lot going on that is even more unpleasant and quite honestly are in a more dangerous of a situation than Reagen. I feel lucky that I can look at a weather report and consider how it might impact us upon departure, but these kids probably don't even watch the 5 day forecast anymore.
I'm certainly not complaining but I want everyone to have a little perspective of what goes on not just here but throughout the hospital and imagine that from a global and personal perspective. It actually helps you feel pretty good about your situation if you were to compare it to one of these kids.
We are doing well. Vicki goes back and forth from work on her laptop and conference calls to taking care of Reagen and me. I go back and forth from work and being stressed out and then I bug Vicki, but it works for us. Keep the cards coming via the internet and keep your eye on the 5 day, we will get out of here.
http://www.nemours.org/e-service/e-card.html
We are in room 3006
Tuesday, July 7, 2009 9:06 AM CDT
Slow but steady...
Reagen is doing well. She still has not shaken her fever completely. It has definitely been lower and longer without it when she takes Tylenol. Her Knee still hurts from time to time but not as bad as before. She has needed a blood transfusion every day and we have been told she needs another one today. We are not really sure why that is yet. Hoping it's just a part of getting better and burning through them in the healing process.
She has been awake much more and overall seems pretty good, but not herself just yet, only in spurts. We think the over / under for getting out of here is probably Friday, but as we stand now we aren't going anywhere. Her ANC is moving in the right direction, but we are no where close to where we need to be. We probably won't make counts for her next chemo either. That in itself is not too big of a deal, but it will push her return to school back a week. Everything has a domino effect. At this point we just hope to get her out of here for her Birthday.
We are well with the usual great support from Mi-Mi, Pop and Mom-Mom. They are the duPont Advance team we count on each time we check in.
I'll keep this updated as we get more news, but right now it's really just wait and see.
To send Reagen a card
http://www.nemours.org/e-service/e-card.html
We are in room 3006
Sunday, July 5, 2009 7:13 PM est
Reagen is in the hospital...
I was looking forward to updating the site to let everyone know about the amazing time we had in New York and how much fun Reagen had over the fourth weekend. I will do that but also have to let you know Reagen had to be admitted to the hospital this morning because of a fever of 103.
New York was great and we did everything you could hope to do in less then 24 hours there. The people at the Ritz Carlton took care of Reagen from the start and then the people over at American Girl did a great job too. We had to get a limo to get us home with all the packages of American Girl stuff we bought. We also spent a fun day in Central Park and just all in all had a great time.
Unfortunately I am having a little trouble with all the details as our concern has shifted from how are we going to carry all this, to why does Reagen have a fever.
We think at this point Reagen has an infection caused by having low counts and a cut on her knee. We are not 100% yet, but they think this is the case. It is really a perfect storm of sorts, meaning her counts probably dropped because of her treatment from a week ago, but you would have no way of knowing that, and low counts and a cut on the knee quickly lead to an infection. What a difference 24 hours makes, this is not the same kid that was running around last night before fireworks.
Reagen woke up about 3 AM complaining her knee hurt and she also had a low grade fever, so low it wasn't high enough to warrant a call to the hospital. It stayed low until about 10 am and then it started spiking and eventually got to over 103 when we were first admitted to the hospital. We got to the hospital around 1 this afternoon and the process started of ruling things out.
Not fun for Reagen to say the least, but she hung in there through everything. She is resting now and has been sleeping most of the day. Her temperature has come down but it is still over 100. She had labs drawn and antibiotics started. Her ANC is 12, and no I did not forget a zero or two. We are officially in lock down. She also needs a blood transfusion and will probably get that sometime this evening. We will likely be here for a good part of the week and will probably have her next chemo pushed back. It's nothing unheard of, but you always like to stay on track as much as possible with chemo and not get too far behind.
Reagen has shown bits of her sparkle when she has been awake and has been very pleasant. It has not been much though, probably less then and hour all day. We'll sit and wait for her body to rest, respond and re-bound. That's really all we can do right now. It's a weird sort of quiet, much different then when we are here and waiting for the chemo. She is really sick and not feeling well and we are kind of on the edge of our seats for anything to happen. We have been in this position before which makes us a little better prepared to help Reagen, but it's still a tough spot for everyone. At least we feel a little more in control of expectations because we think we know what the cause of this is.
We are in room 3006 if you want to send Reagen a card.
http://www.nemours.org/e-service/e-card.html
I will update the site as we get new information and let you know how she is doing. We are all doing well here together and taking care of each other. Thanks for checking in on us.
Wednesday, July 1, 2009 7:41 AM CDT
Quick update...
Made numbers (not by much) and heading to NYC and American Girl. Jumping on a train to New York and then over to the hotel to check in. Reagen meets her personal shopper at 2.
This is going to be great for her. For me, I think it's setting a bad precedent. We will all have a blast. Look out NYC, here we come.
Sunday, June 28, 2009 11:15 AM CDT
We have ben sprung...
Yes we are out. About 8:30 this morning we got out of duPont. We are all tired, me mostly I guess. I don't know how Vicki does it. I came home took a nap for an hour and I'm still spent, while Vicki been running around and playing with Reagen and the dog and is fine, she even made a fruit salad. She is totally amazing.
I was a little bummed leaving the hospital, Reagen's counts keep dropping. Yesterday she was below 500 which means we had to stop her daily chemo until she gets over 1,000. Today we woke up to a low of 140. This now puts Reagen in jail at home. No visitors or kids and no public outings. She is not happy about it and neither are we. It just sucks for her, she gets stuck in the hospital for 4 days and now can come home but can't go anywhere. It's mental torture.
This also means our trip to New York is up in the air. We have to go back Tuesday for labs to see if they have come up. We think there is a good chance they rebound, but you never know. It's just the up and down stuff and the constant maintenance. I hate telling her, you can't do this, you can't do that or wash your hands or stay away from whatever. She's a good kid and we have to be on her constantly when numbers are low and everybody is tired of it. It just wasn't like this before she relapsed and it just sucks to be back here sometimes.
We are hoping for a fun Sunday at home and just chilling, but that's hard for a seven / almost eight year old to just chill. We'll get something going I'm sure. We'll find our way, just need to pick the right path today.
Sunday, June 28, 2009 11:15 AM CDT
We have ben sprung...
Yes we are out. About 8:30 this morning we got out of duPont. We are all tired, me mostly I guess. I don't know how Vicki does it. I came home took a nap for an hour and I'm still spent, while Vicki been running around and playing with Reagen and the dog and is fine, she even made a fruit salad. She is totally amazing.
I was a little bummed leaving the hospital, Reagen's counts keep dropping. Yesterday she was below 500 which means we had to stop her daily chemo until she gets over 1,000. Today we woke up to a low of 140. This now puts Reagen in jail at home. No visitors or kids and no public outings. She is not happy about it and neither are we. It just sucks for her, she gets stuck in the hospital for 4 days and now can come home but can't go anywhere. It's mental torture.
This also means our trip to New York is up in the air. We have to go back Tuesday for labs to see if they have come up. We think there is a good chance they rebound, but you never know. It's just the up and down stuff and the constant maintenance. I hate telling her, you can't do this, you can't do that or wash your hands or stay away from whatever. She's a good kid and we have to be on her constantly when numbers are low and everybody is tired of it. It just wasn't like this before she relapsed and it just sucks to be back here sometimes.
We are hoping for a fun Sunday at home and just chilling, but that's hard for a seven / almost eight year old to just chill. We'll get something going I'm sure. We'll find our way, just need to pick the right path today.
Thursday, June 25, 2009 11:45 AM est
3 out of 4 ...
We have landed on 3a in room 3003 if you want to send a card here is the website
http://www.nemours.org/e-service/e-card.html
I must say we have had an awesome week off since last time we were in here. It was busy, busy, busy and here are the highlights:
Reagen got to go to the last day of school and pizza party!
Last day of school pool party!
Trip to Avalon and stay at Uncle Steve's house!
Visit with her friends in Stone Harbor!
Play on the beach and dinner with friends in Sea Isle!
Tooling around on Uncle Steve's boat and dinner at Sylvester's!
An amazing Father's Day!
3 days of fun with friends from Arizona at our house!
Hershey Park and every non-looping roller coaster in the park!
And, the Super Duper Looper!!!! (first ever loop for Reagen)
We are all tired.
Counts remain good and we are plugging ahead with the third of four hospital stays. Reagen also had her spinal tap this morning under general anesthesia and everything went well. She is now recovering by heading over to Childlife with Vicki for arts and crafts. Reagen has been playing hard and just having a blast. Watching her sometimes just fills me with emotion. I really can't get a grip sometimes if I'm happy or sad seeing her out doing normal stuff. Sometimes it bugs me that she can't be as healthy as she was before her relapse and how I notice people stare a little bit with pity when we go by. Other times her big smile just brightens everything and blinds us to all the negative stuff. Either way I want to cry, but it just never comes out. (I can't wait for that to happen, look out) We are really fortunate to witness Reagen's strength and drive. She is the driving force behind us as any kid is to their parents, but we are just lucky enough to see these things are their most extreme level.
Since Reagen may or may not be feeling well or could be in the hospital around her birthday we (she) has decided to have her birthday celebration early. We are planning an overnight trip to New York to visit the American Girl store July 1st and 2nd. Her actual birthday is July 13th so we figured it was close enough. Reagen bought decorations for the hotel room and party favors for any potential guests. We will be taking the train up and back too since this is as close as Reagen can get to a plane. The kid loves to fly, so we are hoping this will hold her for a little while.
Overall now we are just hoping for another un-eventful stay in our suite at duPont. (again the hospital not the hotel)
We'll let you know when we are out.
Wednesday, June 17, 2009 4:56 PM EST
"Two Goals"...
A man took his young son on a hike one rare day. He knew it was important for them to be together, and the son was excited. There was a plateau they would climb to so that they would have a level place to camp.
The first part of the hike was great. They talked. They enjoyed being together. But they weren't moving very fast. The man got a little upset at the slow pace and started pushing his son to walk faster. He finally found himself carrying his pack and almost dragging him.
They made it to the plateau just in time to set up camp before dark. The boy fell asleep before the man had the campfire going. When the flames grew and lit his face, he saw tear stains.
There are always two goals. One is to get there. The other is to enjoy the journey. Too much emphasis on one can ruin the other. How difficult it is to appreciate the present and enjoy the journey rather than wish for the past or the future! Even through the hassles and seemingly boring routines of life, it is crucial to remember that memories are being made today!
People can be categorized to a rather amazing extent by the first thing they think about when they wake up in the morning. There are the high-achievers, who bounce out of bed and say, What can I accomplish today? There are less positive but still very dutiful types, who say, What do I have to do today? And there are the burdened, defensive people, who essentially say, I wonder what will happen to me today?
But there may be a fourth alternative -- a better thing to think with our first consciousness of the day. It is, What can I enjoy today? What are the challenges of this day? The responsibilities? The opportunities? And how can I enjoy them?
The need of course is for balance. Someone who thinks only of getting there is more and more an insensitive, self-driven robot, while someone who thinks only of enjoying the journey can become an aimless, unfulfilled drifter.
The challenge is to remember that in everything, big and small, from a career to a vacation, from building a house to climbing a mountain, there are always two goals -- to get there and to enjoy the journey. When we are conscious of both, it is usually possible to do both. And when both are not possible, we need to stop and think about which of the two goals is most important for that moment.
Sunday, June 14, 2009 3:12 PM est
Home again...
Reagen has re-defined the word tough. Not that her stay was all that bad, other then the three IV lines hooked up to her, taking longer then last time to clear the chemo out of her system and the blood transfusion she needed, everything was great. I mean it, actually great. She made a friend on the floor and played monopoly and sang karaoke as if there wasn't a care in the world. She had a friend from school visit and giggled all day like they were having a sleepover. The only tough time she had was when they told her she didn't clear the chemo out of her blood and she would have to wait to leave. She didn't make it again four hours later, but luckily she was asleep and didn't notice. Vicki and I did, but that just meant a rough night and little sleep and then at 6 am we were sprung. When we walked out of the hospital with the sun up, Reagen said, it's just like we are down at the beach. She didn't seem to realize all the drugs that were pumped into her to kill cells, to recover cells, to hydrate her and to add red blood cells. Her little body must be going crazy inside and she feels like she's down the beach. All I had to do was stay there and watch and I felt like I was coming off a three day bender. She defines tough.
All in all it was a good non-eventful stay, just long for all of us. We had a stop at Mom-mom's to pick up Lilly and then home for a power nap. Things are starting to get back to our version of normal.
Reagen will actually be able to go to her last day of school tomorrow. Vicki has been looking forward to this for a couple of months, but I never really gave it a thought because I didn't want to be disappointed. I'll give it to Vicki, she has worked the schedule and set appointments way in advance so we could be in a position to do this if everything worked out. I'm really happy for both of them that it's going to work out.
Busy week ahead but going to enjoy the nice day we have.
Be well, be lucky,
Rob, Vicki, Reagen and Lilly
Thursday, June 11, 2009 5:51 PM EST
We are checked in...
It really stinks when you are so happy to be checked into the hospital, but that was the reaction today from all three of us when we got Reagen's numbers. I guess we all know that it is one step closer to the end of this for Reagen.
So first things first
http://www.nemours.org/e-service/e-card.html
Room - 3007
If you want to send Reagen a card, try to get it in early, they stop delivering around 3 on Fridays to her room. She just got a bunch yesterday in the mail at home from the last stay here but still had a lot of fun opening them.
Reagen is really doing great. She got to go to school yesterday to pick up her yearbook and see her friends. She stayed after school to have her regular class there instead of at home, I think it was a nice switch. The kid, parents and teachers at her school have been so awesome, we are very lucky that they have been there for her and us this past year. Reagen will actually still be in treatment through the fourth grade so we will be testing their stamina.
Reagen had a Lemonade stand over the weekend with Carley and raised some money for other kids. It was all their idea. She took all week to shop for presents for the kids and had her Mi-Mi out twice to spend just under $40. I think that's pretty funny because when she has our money $40 can go in 15 minutes. She brought the goodies to the hospital with us so she could give them to the nurses. She had some special hairbands she wanted to give little girls that might want them. We are proud of her for doing this on her own, we didn't push even a little, it was all on her.
Lilly is a great focus for Reagen. She asked that I bring her to school when I picker her up yesterday and they were both happy to see each other. Lilly was nice enough to leave a little pile of presents right outside Mrs. Guy's (principal) office window. I'm glad I had cleanup bags and Lilly didn't get detention. Lilly also now sleeps with Reagen. She is very good with Reagen and has really bonded.
We are here at duPont so if you are in the area come on by, we aren't going anywhere.
I'll update when we get out, keep your fingers crossed for another uneventful stay.
Rob, Vicki, Reagen and Lilly
PS - Congratulations Jess!!! (Our niece graduates from high school tonight)
Tuesday, June 9, 2009 10:25 AM EST
Been a great couple of weeks...
I know it's been just a week without going to duPont, but it feels like a year for us. Reagen has been feeling great (for her) and we have been enjoying our time away from the hospital.
The schedule now calls for us to head back on Thursday and if counts are where they need to be we check back in for another round of chemo. I don't expect it to clear as fast as it did the first time, but you never know. Unfortunately the quick turnaround for Reagen probably set expectations for her and us so we will have to help set different ones heading into treatment and hope for the best.
We are always looking for some type of indicator that this will be done forever or how Reagen is responding to little things, like clearing the chemo means that she will not have too difficult a time and that chances for another relapse are less. We could never get anyone clinical to commit to this theory, but we are hopeful none the less, and I imagine that just looking and feeling good have to be helpful for her treatment.
Hopefully I'll update from the hospital as we look forward to another non-eventful stay.
Saturday, May 30, 2009 11:21 PM EST
We are getting out...
Reagen had all her chemo and really worked hard to help it clear her system. Because of HER hard work she has helped the chemo clear. If the process was not held up in the beginning we would be heading home now, but it looks like we will spend the night since it is so late.
Our stay was uneventful as hoped for and everyone at the hospital was on their game as always. We have more of these and we can only hope they go as smooth as this one.
okay... They said we can go tonight and Reagen really wanted to go tonight, so I just called my Mom and told her we were picking up Lilly. There is no way you can turn Reagen down when she says "Dad I really want to get Lilly and go home". How can you say no to that? She does everything we ask, so we'll probably get going by 12:30 and by the time we get Lilly and get home it will be after 2. Oh well, I've been out late for far dumber reasons.
Home sweet home here we come...
Wednesday, May 27, 2009 9:54 PM EST
Happy to go to the hospital???
Reagen had labs drawn today and she made counts! This means tomorrow we leave the house at 5:20 AM and head to hotel duPont (for children, not the nice one). Reagen will wake up only to be put back to sleep again for a spinal tap and chemo. After she wakes up we will be admitted to the floor for chemo and a minimum 4 day stay. We are expecting a relatively boring time. We hope that is what we get. Vicki and I as well as Reagen all have our laptops packed and books to read. Vicki will be able to get caught up on a bunch of work (she has to do that quite a bit) and we will find things to amuse ourselves while in lock down.
Reagen is upbeat about the whole thing. We all went out to dinner tonight and staying up late to get in some extra tv time. (Lilly too) None of us are looking forward to this, but we are in some ways. It is another phase of therapy starting and it's another milestone to check-off. Been there, done that if you will and we are that much closer to the end.
I will update the bottom of this page when we are admitted with the website and room number so people can send Reagen e-cards. She loves it so send as many as you want. The hospital prints them out and sometimes they deliver them 2 or 3 times a day. We don't expect anything too big and hope for a boring and uneventful weekend. Please wish us the same and hopefully we'll be home sometime on Sunday.
Sunday=Funday
http://www.nemours.org/e-service/e-card.html
Room - 3003
Thursday, May 21, 2009 8:11 AM CDT
This schedule sucks...
We knew when Reagen relapsed that the schedule was going to be a challenge. It's difficult enough on her and then you throw in unexpected twists and turns that make living through this just a little more difficult.
The "plan" was for Reagen to start the next phase of treatment today. In order to do that she needed to make counts (have her numbers a high enough level she could tolerate chemotherapy treatments). Guess what, we didn't make them so everything gets pushed back a week. In and of itself, this is not a big deal, however since we are Amands we plan things and this bump in Reagen's schedule sends a ripple effect through the whole Amand system.
Oh well, shit happens and it won't be the first time we have had to change a couple things around. The tough part to swallow for Reagen is not only was she mentally prepared for the procedure and then the 4 - 5 day hospital stay, but her counts are too low for her to really go anywhere for the next few days, so she is land-locked to the Amand compound.
So, we have a week off. Reagen still has to do her regular meds but should be feeling pretty good for the weekend. Our new plan is to ride it out and have some fun over the 3 day weekend. We'll deal with next week when it happens. It is typical for a relapse case to be held up and probably held up again during this next phase. The trick is that you don't want to be held up for too long as that allows the cancer to build back up and could lead to a relapse during treatment, but we are not close to that, it's just scary to think about.
This weekend will be filled with playing with Lilly, camping out in Reagen's park next to the house, riding around on the golf cart, hot dogs and clams I'm sure. (Reagen can eat about 30 - 40 at a single sitting, she loves them) It's not too bad really, it's just difficult when you don't have choices.
Have a great memorial day weekend and thanks for checking in on us.
Reagen, Vicki, Rob and Lilly
Tuesday, May 12, 2009 8:59 PM est
Wow!
ok real quick, we had clinic today Reagen had to get another blood transfusion blah blah blah. She goes back on Friday and will probably will need another Blah blah blah (It is for real but that's just cancer stuff)
The big news....
Reagen got a golf cart. The kids in her class and their parents all chipped in and bought her a freaking golf cart. I wasn't even home when it arrived, but Reagen was with Vicki's sister and boy were they surprised. It was a truly amazing gesture. Without going into detail, it will be needed over the summer and is more than a luxury for Reagen. It will also be nice for me and Vicki to be carted around by our daughter as I am retro-fitting a cooler on there somehow. (for juice boxes of course)
Reagen is learning to be a safe driver, but we ride with her. Lilly also makes the trip as she fits in the basket on the back and is happy as ever riding along with her girl. A few little areas to work on with safety and maintenance, but we will work out the bugs. It would be nice at some point to get my parking spot back in the garage, but that will get figured out too. When I was a kid I didn't even have a garage so I'm going old school and parking outside.
Reagen also attended a birthday party over the weekend for one of her friends and had a blast. She was hesitant at first, but had a great time and was back to herself once she warmed up.
On Wednesday last week Reagen got to throw out the first pitch at a high school baseball game that was a benefit for the catcher who will be heading to CHOP for a stem cell transplant. She was nervous, but got out there and did it with about 1,000 people watching.
And...... She went to school to get her picture taken with her class. We were amazed. It was her idea and I don't think we could have kept her from it.
This kid is tough. I really think that in the order of the universe you should see your parents go through life and pull strength from seeing them live well through adversity. It builds character and a respect for what your parents have accomplished. Vicki and I were both lucky enough to witness our parents and we are who we are because of them. However, I find that currently we are stronger, more focused and able to accomplish far greater things because of Reagen. Her strength drives us, especially me to places I never thought I could go. It shouldn't be that way, I should be driving her and she should just be a kid, but it is that way and we accept it, not without a bad taste, but we do and we are stronger for it. A little seven year old girl is teaching us more about strength and perseverance then we ever thought possible.
I'm rambling a bit. She got a golf cart! She is very happy and we will get through this, she will see to it with your help.
There is nothing more we can say, Thank you all very much.
Sunday, May 10, 2009 4:03 PM CDT
Below is a post I made 4 years ago. It is all still very true today. Happy Mother's Day, we could not have gotten this far in 4 years without them.
Sunday, May 8, 2005
Happy Mother’s Day
There is not a card, flower or gift that can show the appreciation for a Mom. This is a feeble attempt to express the appreciation I have, but I know as I start that it will not suffice. I have witnessed first hand the power they posses to heal, comfort, love and lead in crisis situations.
Thank you seems too small to cover all they do yet they would not accept more. I will never know what it feels like for Vicki to experience a daughter going through such anguish. Reagen is a part of her soul and I know she feels each, pinch, prod and pain Reagen endures. She tends lovingly to every whim, cry and need Reagen can muster. She keeps control when everything around her is in chaos and doesn’t let herself breakdown until it is the “right” time.
I could share many stories that exemplify how Vicki keeps this family and this situation moving in direction towards healing on many fronts, but I would pay a price. Those of you who know her from family, friends and co-workers have all witnessed her strength, humor, sacrifice and ability to lead. It has all been intensified in the intimacy of this current situation. Without her we would not be able to see this through. She is our rock.
Thank you and we love you,
Reagen and Rob
I would also like to thank our Mothers. I can not imagine what it is like to watch your own son or daughter stress over the pain of your own grandchild. While in the midst of this situation you not only comfort, but act to make the situation bearable. By doing all the things you have in your own life and tending to the needs of not just one, but three other people in need of your help. A farm of Mother’s Day flowers would not be enough to show our appreciation. Vicki and I both lean on our Moms to provide not just logistical support, but in the really tough times the actual ability to keep going. They truly lead by example. You never once hear of their own challenges that they face on a daily basis. You only hear, what else can I do?
Thank you and we love you,
Rob, Vicki and Reagen
Witnessing the strength and souls of these three women has never made me feel so weak and so strong at the same time. I do not have expectations of achieving their stature, but I know that with their support I can and will overcome the challenges that I face with them by my side.
Have a wonderful Mother’s Day
Tuesday, May 5, 2009 8:19 PM est
Long day....
We left the house at 9 am to head to the clinic, we got home at 6:30 pm. Reagen did a great job again. She had a couple tough moments but recovered strong. She deserved a couple moments after her day. Here is what was on her schedule and I'm leaving some stuff out.
1) Port access and blood drawn
2) A break to childlife to make some mothers day gifts
3) Lunch in the cafeteria
4) Blood transfusion #1, about 1 hour (platelets were very low and has been causing a lot of bruising)
5) Blood transfusion # 2 about 2 hours (the nurses commented how they couldn't believe how much energy she had for her low hemoglobin)
6) Explain to Reagen she has to have chemo shots in her legs (this has been done before and will happen again, and it's very painful)
7) Topical cream applied to Reagen's legs to help with pain for two shots she will get in about an hour
8) PEG shots (administered simultaneously by two nurses into Reagen's upper thighs)
9) Port flushed and then a second chemo for the day added to her blood
10) Wait 1 hour and have vital signs checked every 15 minutes (this also happens during blood transfusions)
11) Port de-accessed
What did you do today?
Note: Reagen also woke up to get sick about 1:15 am and wanted to discuss what she ate the day before and if it could be identified in the toilet.
Currently, you think she would be resting, however she (which means we) just got back from a walk in the rain with Lilly. Then a bath with a lot of singing resembling Hannah Montana, but I was in the office. Now we are working on a chill party (I don't know what that is yet) in the TV room (which is also the bar for me and Vicki).
I can't explain how tough this kid is. There are no words to explain the pain she has endured today alone and with about as much crying and complaining (maybe less) as some kids in a toy store when they don't get something they want. (BTW, she can do that too)
We Love You Reagen.
Monday, April 27, 2009 10:38 PM CDT
Just and update to say that Reagen is feeling terrific and had a wonderful weekend. Since her ANC was good, I took her to the Fun Fair at her school on Friday night. This was huge for her, as it was the first time she has seen her friends at school since February 9th. She was first very apprehensive about going, and almost didn’t go, because she was afraid that some of the kids would laugh at her because of her hair. I assured her that her friends would never do that, and that they missed her so much they would be so happy to see her. Well, when we got there, it didn’t take long for a small crowd to form around her. Word spread quickly that she was there and Mrs. Ryan, Mrs. Guy and kids from her class and their parents all came to greet her. Cut to the end of the night and the only people left at the school were Reagen and three of her friends, running around on the playground in the dark! She had a terrific time, and when we got home, she said, “Mom, no one asked me about my hair. I don’t even think they noticed.”
To the kids and parents at West Vincent, especially those in Mrs. Ryan’s class: I want to thank you for making Reagen feel so special and loved, and for treating her with such kindness. I can’t tell you how happy she was on Friday night, and how good it was to see her playing and running around with you at school again. Thank you. You are terrific friends!
Our weekend only got better when we got a spur of the moment invitation to Ocean City with our friends. Reagen had a great time with Olivia and Grace, and they all took their boogie boards out Sunday morning to catch some very cold waves. Crazy girls!
This weekend was one of those where we had the opportunity to take advantage of good counts and be out in public. Reagen certainly has had and will have more than her share of low counts, hospital stays, and days spent in the clinic, so when we have the chance to get out there and live, we have learned to grab it. You never know how long it will last, and I think we are all pretty good about living in the moment. We have a terrific support system, and we certainly couldn’t ride this roller coaster without our family and friends. Thank you – you know who you are!
We head back to the clinic tomorrow for counts and chemo. Reagen will have her port accessed until Friday, and will get chemo at home Wednesday, Thursday and Friday. We are not expecting those good counts to last much longer, so we will get labs again on Thursday.
Thanks for checking on us –
Wednesday, April 22, 2009 7:17 PM est
We have our end date...
I know it seems crazy to be happy we started chemo again, but we need to start in order to get an end date. So mark your calenders for May 18, 2011. That will be Reagen's last day of chemo.
Writing the date makes it seem so far off, but when you're in this every day time can move by pretty quick. You have some long hours and days, but overall we are busy and happy. We actually have some pretty good family time too. I would much rather be going to riding lessons or soccer games then spending time at the clinic or the hospital, but we make the best of it and in the long run we will all be stronger for it. Reagen was not given a choice so she deals and we deal, It's just a little early in her life for her to realize you don't get to choose each path you are on. Hopefully we are showing her how to enjoy each journey you have regardless of the situation.
We spent a rather uneventful 2 days in the hospital. You can see pretty quick how the chemo effects Reagen, but she also bounces back pretty quick. She had a great time with the nurses and spent a lot of time reading and learning about how the hospital works. There was a code blue, she asked to see the crash cart including how the paddles work. She saw other kids getting moved on and off our floor and wanted to know why they had more bags of fluid then her. She even got her own stethoscope and started listening to our heart and lungs. She also listed to Lilly's when we got home. The home care nurses the next two days are going to have their hands full.
We had our happily ever after happen once and now we are going after it again. They say the second time around is always better. It will be, and Reagen will live her happily ever after again. It starts on May 18th 2011.
Monday, April 20, 2009 8:01 PM est
Making another hospital run...
Reagen should be on track to re-start her chemo treatments. We go to the clinic tomorrow for labs and a check-up. If her numbers are high enough we will be admitted and start chemo again. It's actually kind of surreal reading this after writing it. I still can't believe Reagen is getting chemo again. We just keep plugging away one treatment at a time and get closer to being cancer free.
Reagen has been feeling pretty good since getting out of the hospital on Friday and had a good weekend outside in the warm weather. She loves that dog and it's nice to see her walking around the yard and her playground with Lilly. Just the two of them, plain old kid time.
The recent fever and low counts have put us behind in treatment a bit, but only by a few days. This is more important then you think only because once we finish this round the 2 year clock officially starts ticking. It gives us a hard date for when treatment will be over and we want every day we can get without meds and chemo.
While Reagen is in the hospital you can send her an e-card. They print them and deliver them in a package to Reagen a couple times a day. She loves it. Here is the site again...
http://www.nemours.org/e-service/e-card.html
We are hoping for an uneventful stay followed by two days of home care and then free and clear until next week.
Thanks for checking in on our girl. She is tough and doing well.
Rob, Vicki, Reagen and Lilly
Friday, April 17, 2009 9:27 PM CDT
Home!!!!!!
I think they let us out on good behavior today – Reagen’s ANC is only 418, but that was good enough for our docs. It certainly was good enough for us. We got home around 3 today, and we met by Mimi, Pop and Lilly a short time later – boy did Lilly grow in just 4 days! It was a terrific reunion of girl and puppy.
Due to Reagen still having low counts, we didn’t get chemo but need to go back on Tuesday for labs. If they are good enough, we will get admitted for an overnight stay and 2 types of IV chemo, as well as start oral chemo for 2 weeks. One of the IV chemo drugs will continue at home for a few days and will be administered by visiting nurses.
We are planning on enjoying a quiet weekend – low counts also don’t allow for much company or venturing away from our house– and are hoping to soak up some good weather over the next few days. Reags wants to clean the place up, as she says, and plant some flowers. Why do I have the feeling that she isn’t going to do much of the work?
Thanks for checking on us.
Happy to be in our own beds,
Rob, Vicki, Reagen and Lilly.
Thursday, April 16, 2009 9:04 PM CDT
Still waiting…..
Yesterday’s ANC – 240.
Today’s ANC – 234.
Goal to be discharged – 500.
Goal to continue with chemo – 750.
Not the direction we wanted. So, we wait. Reagen feels pretty good. No fevers, and still nothing from her blood cultures. They have taken her off of one of the antibiotics, and she is not on any IV fluids, so she is free to roam around the floor for all but about an hour a day without her IV pole in tow. She must have done 50 laps around the floor on the bicycle, and the nurses only had to tell her to slow down a few times.
She is going a bit stir crazy I guess, and our room and the floor seem to be getting smaller each day. She likes to spend as much time as she can outside of our room. Even though she can roam around the floor, she cannot go anywhere off the floor, including to Child Life, which is her favorite place. I was able to go there and bring some things back for her, but it’s not the same. What 7 year old likes to be confined and told what she can and can’t do? Still, she is being a terrific sport and is doing all that we and everyone here ask of her.
So, we will see what morning labs bring. Her appetite seems to be picking up a bit, so I will take that as a good sign and go to sleep with positive thoughts.
Thanks for checking in on us, and to all of you who sent Reagen an e-card today. I think she really enjoyed all of the mail. (See the link below to send an e-card to her – her room number is 3010.)
Love,
Rob, Vicki, Reagen and Lilly
E-card link:
http://www.nemours.org/e-service/e-card.html
Tuesday, April 14, 2009 7:28 PM CDT
We are still inpatient. Reagen hasn’t had any fevers today, and all of her blood cultures are negative, but her ANC remains very low. It was 56 yesterday as Rob said, and now only 72 today. The docs say they are keeping us here at least until her ANC gets to 500. We were supposed to come in this Thursday for an overnight admission to continue with this round of her chemo, provided that she made counts, but that includes her ANC reaching 750, so chemo for Thursday is not looking too promising. Hopefully we will all be surprised…it’s happened before I guess.
Reagen had a transfusion of red blood cells last night, and is receiving 2 different IV antibiotics, so today she felt better that she has in a few days. She even got some freedom from the IV today and was unhooked for a while - she took advantage of her freedom by playing air hockey and riding a bike around the floor a few times. She enjoyed some play time with Dad and then Mom-Mom, and now is resting. Her appetite has been pretty poor. I am pretty sure she has not had any candy from her Easter basket, but she did discover Dr. Walter’s secret stash of yogurt smoothies, and well, I just think she likes drinking them because they are his!
So, we are hanging out here for a bit it looks like. We will get our morning paper again tomorrow and see which way things are heading. We can only hope they go up quickly so we can get this little girl reunited with her puppy – she misses Lilly so much.
We will try to update again tomorrow.
Love, Rob, Vicki, Reagen & Lilly
Monday, April 13, 2009 7:35 PM est
Happy Easter, Happy Birthday... Unfortunately not for our little girl.
We knew this run of good health would end at some point. You can't fill your body with chemicals to kill off cancer and expect it to kill some of the good stuff that keeps you going. Reagen's counts today were 56. That is almost no immune system at all, so her body responded with a fever. Easter was well planned by our little bunny watcher unfortunately her body could not keep up with the promises in her mind. She did her best to hang in there with her cousins and friends, but she felt horrible for most of the weekend and ultimately ended up at duPont today. Good timing I guess as soon as we got there her fever spiked and at one point was over 103. She is feeling better and resting with Vicki and the Docs are taking care of her. We'll have to wait and see how she responds and how her counts come back.
To be clear, this sucks for everyone and most of all Reagen, but this is how cancer treatment works and unfortunately a lot of you know that already. The good news is that her liver is fine (thanks for the tip uncle steve), and this is just a normal part of the process. Reagen is the process and she has to endure this surprise with everything else. She took it like a champ though and understood it was the best thing for her to go to the hospital. She is really growing up fast and acts much older than a typical 7 year old.
We are on the rebound track (I hope), but it's a wait and see game now with her labs. At 4 am they will draw labs and when Vicki and I get up around 6 or 7 we'll check out the report and see how she's responding. One of us will go get coffee and the "morning paper" as we call it and we'll review all the numbers and indicators of how they are and may be next time labs are drawn.
By the way, the worst part of being in the hospital is that Reagen really misses Lilly. I think she's planning a goodnight call to Lilly later tonight.
Let you know how things are going when we know.
Friday, April 10, 2009 7:12 AM est
Doing Great!
A very long day at the hospital yesterday. Typically the hospital runs smooth, but there were just a ton of missteps yesterday that we had to navigate through. In a big machine like this you really need to keep our eye on the little things due to the amount of people involved in Reagen's treatment. It's just hard to for them to keep information straight and during the information transfer things get mis-communicated especially when everyone is playing "cover your ass" in an over litigated world. Luckily everything worked out the way it should, just frustrating for Reagen, and that's what Vicki and I try to protect the most. We have to keep them moving correctly or it impacts her and we have found that if you don't take an active role mistakes do happen.
Reagen did get a blood transfusion and a spinal tap yesterday. Everything went well and she has a lot more energy already this morning. Reagen's numbers are good enough for easter activities and even the movies today. They will probably start to drop later next week, so we are taking advantage of the time we can spend in public and around family.
The easter bunny will be making a stop here and hopefully delivering Reagen a happy easter. I think he might even have some stuff for Lilly. All good on this end and looking forward to a great weekend.
Happy Easter have a great weekend, we will.
Rob, Vicki, Reagen and Lilly
Monday, April 6, 2009 11:13 AM est
Rolling along...
Reagen is doing great. She always finds a way to continue to push forward with some of the worst circumstances. She has really been a trooper and has been feeling really good. She actually said to Vicki that she is happy to have vacation from school this week. It cracked us up since she has not attended school in a while. The last day she was "in" school was February 9th, though she does work hard on her homework and with Mrs. Ryan.
Last week Reagen had to get PEG, which is a tough one. Not so much for the side effects, but it's one that can not be administered through her port. She has to have two needles done simultaneously in her thighs. It hurts, but the nurses do a great job of helping her through it. It also helps when Mommy pulls out a webkinz just before the shots too, but not enough. Reagen will have more of these this time around as opposed to last time.
Her counts were dropping pretty fast, so no community activities or stores for Reagen. The good weather on Sunday helped break any cabin fever, she was actually out riding her bike. We thought she would need another blood transfusion, but she has held her energy pretty well. Lilly has really been a blessing too, she runs like crazy with Reagen and the exercise is good for her.
This should be a pretty good week. Not expecting anything too big, though we have clinic on Wednesday and a spinal on Thursday. Hopefully she will have better counts and be able to head out for Easter.
Vicki and I reviewed Reagen's treatment plan and started looking at dates as far as being able to do, or not do certain activities. It helps to plan a little bit, but only in small chunks. We can start counting down after Reagen completes this next phase in a few weeks.
Be well,
Rob, Vicki, Reagen and Lilly
Tuesday, March 31, 2009 3:06 PM EST
Back to life, back to the hospital...
Gaining perspective.
No update last week, sorry, but wasn't in the right frame of mind to (B ) "be positive" in my post. First thing first, Reagen has been doing great with her treatment and she has really done everything the doctors and her parents have asked. She doesn't complain about it either. She does ask questions though and they are sometimes hard to hear not to mention hard to answer. She asked Vicki if the cancer could come back a third time. What do you say? It's a fine line between being honest and keeping the drive alive.
I struggled with this whole thing early last week for a few days. Just angry and bitter. Vicki helped me frame my thoughts and it's kind of explained like this. People ask how Reagen is doing and the answer is difficult. Not because we don't know how she is doing, because it really depends on the perspective.
Perspective is defined as - "a particular attitude toward or way of regarding something; a point of view :
- true understanding of the relative importance of things; a sense of proportion : "
Depending on how you look at things the answer changes. Reagen in her current situation is doing great for a kid who is battling cancer. If you look at Reagen as a normal seven year old girl, she doing shitty and all around every day things suck for her. So, depending on how you choose to look at the situation the answer changes.
Since our discussions on perspective I have been fortunate or unfortunate enough to spend a lot of time at the hospital and see and hear what some other kids and their families are going through. That has given me even another perspective and one that I have held on to since last week. Based on what they are challenged with, we aren't so bad off and Reagen has a great chance to get through all of this. Don't get me wrong, I don't think for one second and either does Vicki, that this is about us. This is all about Reagen, but without the right perspective we can't support her the way we should. She is incredibly strong and has a great attitude and we need to match that so when she asks tough questions we can "B " and tell her no way, when this is over you're done and you will be fine.
Tomorrow we head back to the hospital for labs and her port access. Thursday is a spinal tap with chemo. We should be home for a great weekend together as a family. Only 2 years and a month and a half left. We can do this.
Thursday, March 19, 2009 9:30 PM CDT
ok, it's been a little while...
The best news we have received this week is that Reagen is 100�n full remission. We are now clear to move onto the next scheduled phase of treatment. It also means that as long as things continue down this path Reagen will not have to have a bone marrow transplant. Reagen will still have to endure a long road, but the more I learn about transplant and the risks involved I'll be happy to help her take the long way home. It also leaves us the option of bone marrow transplant should we ever get bad news.
Currently we are in the hospital. Reagen is feeling pretty good, but she misses Lilly. They have really started to bond and become friends. Reagen had general anesthesia this morning to have a spinal tap and then we were admitted so she could get more chemo. Actually two types today and one tomorrow and then we should be able to head home. Home care nurses will visit over the weekend to administer chemo on Saturday and Sunday.
Next week will be the same thing, but we don't have to stay over at the hospital, then she gets spinal taps the next four weeks. I might be off a week, so I'll have to ask Vicki, but you get the picture.
Reagen started school this week with Mrs. Ryan and it went well. Reagen takes it serious and she still does her homework just like being in school. It is actually a bright spot in her day thankfully because she likes school and Mrs. Ryan. We are fortunate to have OJR (school district) and their staff on our team, it is really making a difference.
Reagen really misses her friends, and wants to let them all know she is doing okay and can't wait to see them again, but it just might be a little while, but she will be back!
Vicki and I are hanging in there and I have to admit we pull most of our strength from Reagen. She is incredibly strong. She has had a few moments that have been emotionally very difficult for her and it has broken our heart, but she bounces back pretty fast. Probably faster then us, but she keeps a lot of stuff inside and when it comes out it is gut-wrencing.
It's a little hard to write now, because I don't feel overly positive or negative, just a little numb and machine like. We have some fun, and we are trying to make the best out of this, and as a family unit we are strong, "but"....
The only way to explain this situation is everything is normal "but"... And every thing you do seems to end with "but". For example Reagen took Lilly for a walk to the end of our street "BUT" she was too tired to walk back. There are a lot of "buts" out there and she shouldn't have to deal with all of them.
There is another side that goes like this; Reagen was feeling and looking pretty sick, "BUT" she smiles and shows that sparkle in her eye and says something funny. That is the other side of "but" that we try to focus on. She is going through hell, "but" she will get better and she will do incredible things.
We'll be home all weekend getting chemo and laying low. Thanks for checking on us.
Rob, Vicki, Reagen and Lilly
Monday, March 16, 2009 2:59 PM CDT
Two Goals...
A man took his young son on a hike one rare day. He knew it was important for them to be together, and the son was excited. There was a plateau they would climb to so that they would have a level place to camp.
The first part of the hike was great. They talked. They enjoyed being together. But they weren't moving very fast. The man got a little upset at the slow pace and started pushing his son to walk faster. He finally found himself carrying his pack and almost dragging him.
They made it to the plateau just in time to set up camp before dark. The boy fell asleep before the man had the campfire going. When the flames grew and lit his face, he saw tear stains.
There are always two goals. One is to get there. The other is to enjoy the journey. Too much emphasis on one can ruin the other. How difficult it is to appreciate the present and enjoy the journey rather than wish for the past or the future! Even through the hassles and seemingly boring routines of life, it is crucial to remember that memories are being made today!
People can be categorized to a rather amazing extent by the first thing they think about when they wake up in the morning. There are the high-achievers, who bounce out of bed and say, What can I accomplish today? There are less positive but still very dutiful types, who say, What do I have to do today? And there are the burdened, defensive people, who essentially say, I wonder what will happen to me today?
But there may be a fourth alternative -- a better thing to think with our first consciousness of the day. It is, What can I enjoy today? What are the challenges of this day? The responsibilities? The opportunities? And how can I enjoy them?
The need of course is for balance. Someone who thinks only of getting there is more and more an insensitive, self-driven robot, while someone who thinks only of enjoying the journey can become an aimless, unfulfilled drifter.
The challenge is to remember that in everything, big and small, from a career to a vacation, from beating cancer to climbing a mountain, there are always two goals -- to get there and to enjoy the journey. When we are conscious of both, it is usually possible to do both. And when both are not possible, we need to stop and think about which of the two goals is most important for that moment.
Thursday, March 5, 2009 5:29 PM CST
Lilly Amand is here...
It's official Reagen is the proud owner of a Mazin Labradoodle. Her name is Lilly. There is is some background to this story that is very important to how special this is for Reagen and our family.
Last summer (it actually goes back further then that, but I'll spare you) Reagen attended a special one week summer camp at The Barn at SpringBrook Farm (www.springbrook-farm.org). The morning of the first day of camp she really did not want to go (enough said). Vicki and I have never forced her to do anything, but we felt and knew in our hearts that this would be good for her so Vicki took her. The next morning she was waiting at the door 30 minutes before we were even suppose to leave, so that morning I took her. The entire weeks was a great experience. Reagen fell in love with the counselors and also finally talked to Edie who was a part of the oncology team who treated Reagen on a regular basis the first time she was sick, and who Reagen barely said two words to.
Mary Beth who runs The Barn is just one of those people you have to meet to understand how special she is and she treated all the kids like they were her own. Reagen loves her. Reagen also made some other special friends there Kelly, Rachel and their mom Karen who worked as counselors with the kids all week. Reagen adores Rachel and we have had the pleasure of having her babysit for us on a few occasions. At that time she was the only person Reagen would stay with besides family.
Okay, just so you know who the players are and now go back to a couple weeks ago when Reagen relapsed and was admitted to the hospital.
As we went over the treatment plan with the oncology team a decision was made that we would look into getting Reagen a puppy. It was literally part of the plan along with chemo and everything else. The next day we see Edie (she was working on the floor and had to actually see Reagen as a patient) we mention that we are going to "look" into getting a puppy. Edie took this ball and ran with it, because we had an ongoing joke about getting a dog, and the fact that I had no interest, even though Edie reminded me it wasn't for me.
I think it was a matter of hours after that, we hear from Mary Beth that her and everyone over at The Barn are on it and they will get Reagen the puppy of her dreams. Things moved as fast on their end as they did on the hospital's, maybe faster and before you knew it, Mary Beth had identified a good breeder and gave us any options we wanted. It was better and easier then buying a new car.
As we worked through the plans of getting the puppy and the logistics involved and several hints from me about letting Vicki and I buy the puppy Mary Beth was pretty much hell bent on taking care of everything. I must say that especially during those first few weeks when Reagen was getting treatment started, it really helped thinking about the moment she would have her new puppy and how happy she would be. It made things better even then and planning with Mary Beth gave us something else to focus on.
Well Mary Beth set up everything for the delivery of Lilly (including the flight) and then found out that the breeder "MAZIN LABRADOODLES" donated the puppy to Reagen (www.mazinlabradoodles.com). Another player in this gift.
Yesterday, Mary Beth came with Kelly, Karen and of course Rachel to present Lilly to Reagen. Reagen told us later that she really didn't believe that Lilly was for her.
Later last night when Reagen had to take some of her meds, she was a bit frustrated by it, and then she said "When I took the big one (her steroid), I looked at Lilly, looked out the window, then back at Lilly, and it was gone." Lilly has already proved to be a wonderful gift and a great addition to the family!
So may people have touched us and this is just one example and we are grateful to everyone involved. As I started to think about this experience I also thought of another and then another and I started making a list of all the things people have done for Reagen, and us in just the last few weeks. I had to stop because it is not something that you can list, not to mention there was just too much. The range is great as far as gestures, but the outcome is the same. We are deeply touched and forever changed by each act. Some are logistically challenging and expensive like the puppy, others are simple but effective like a hug or touch on the shoulder at the right moment, kind words or just an e-mail letting us know that you are behind us. Each has helped us to get us through. We know "thank you" will never be enough, but we want you to know that we take that love and use it to give everything we can to this little girl that everyone is rallying behind. Our new family member Lilly will forever be a symbol of all those who stand behind us and a reminder of how good people are and how much they care about our family.
With much love and appreciation,
Rob, Vicki and Reagen
and Lilly
Tuesday, March 3, 2009 3:43 PM EST
This is what stinks....
We are very happy to have Reagen moving in the right direction for her treatment. We also realize it is early and we have just begun and still have a lot of work to do. We also know it could be much worse and we are thankful that we have our time together and a plan to kick this thing.
The difficult part is seeing Reagen so drained from the chemo. She wants to do nothing. I mean she wants to do stuff but just can't pull the energy together to motivate even herself. It's hard to watch as a parent.
The other thing that really bugs me are the simple things we all miss out on. I'm not talking about snowboarding or trips to the beach, but just simple little things. We use to all enjoy getting ready in the morning and going down to the bus stop. They were some of our most treasured times together. Nothing special, but knowing what Reagen had accomplished the first time and how we got through it as a family really made us appreciate something as simple as catching the bus in the morning. Personally I miss Reagen getting off the bus or picking her up at school in the afternoon. There is no hug like a getting off the bus hug. It's simple, but it' special. It's that kind of thing where Reagen does her thing at school, I do my thing at work, but it sure is nice to be together.
I could mention some other stuff that stinks, but I want to remain positive. We are expecting a surprise for Reagen tomorrow, so stay posted, this is sure going to be one thing that doesn't stink.
Be well,
Rob, Vicki and Reagen
Sunday, March 1, 2009 10:20 AM CST
Another Win!
We were hoping that Reagen's bone marrow would come back under 5% and we were informed that it is now at 0%. We are not technically in remission yet, I think we have to wait until after the day 28 test, but we are on track to stay on treatment plan. This is a pretty big deal in our eyes. I know we have a long road ahead, but we feel like we at least have a plan. The unknown stuff is what is so scary, and you can't dwell on it, but as we check things off the list like this milestone you start to gain a little bit of control.
Be well, be lucky - we are!
Rob, Vicki and Reagen
PS - Happy Birthday Mom-Mom!!!!
Friday, February 27, 2009 6:01 PM EST
Long night long day...
We are home and Reagen is resting, but not after a bit of a rough one for her. She had some belly cramps last night that were pretty uncomfortable and kept her and us up for a good part of the night. She got sick a couple of time too. The oncologist thinks it's most likely from the chemo. She had them a little bit today, but as the morning turned to lunch time she started feeling better. She did a great job keeping things together even though she was not allowed to eat until after a scheduled 1:00 pm procedure time. She woke up very pleasant and has been ever since. She is currently taking a little nap.
We will be anxiously awaiting a call from the Docs to see where her numbers are. She really needs to be in remission or very close (under 5% cancer cells in her marrow) to stay on track. Nuff said, we are trying not to think about it and based on everything we have seen up to this point we don't see any reason why she wouldn't have responded, but then again we never expected to be here. As I said, nuff said, trying not to think....
We had a pretty good week with some ups and downs but happy to be home and comfortable. Many friends have reached out to help us get here and every time someone does something nice for us we are humbled by their goodness. It is an uncomfortable feeling for me and Vicki. The generosity of everyone is overwhelming and as I mentioned to a very close friend this week who sent us some help, I don't like being the needy friend. We are much more comfortable on the other side of this. That is really why we started the charity so we could give back. Being on the other side make you realize that you don't have control (we don't actually) and it is difficult to show just how much you appreciate the help. I know you know, but it's still difficult. I hope this makes sense. I guess the big picture is that if somehow we could have kept this from happening to Reagen then we wouldn't need the help and everyone could focus on other stuff. I know I'm rambling.
Moving on, we plan a quiet night at home and hopefully and uneventful weekend. I will update when I have have the results of Reagen's bone marrow biopsy, which will be tomorrow or not until Monday.
Thanks again,
Rob, Vicki and Reagen
Thursday, February 26, 2009 8:40 AM EST
The fine print...
What Vicki and I forgot about at the time of our last posting was that Reagen's numbers had to be below 5% to be on target. This is kind of a gray area. Last time she went through treatment it took two weeks to get her to that number and it is not uncommon for it to take some kids a little longer to get there. Unfortunately that means our schedule for treatment has changed and we need to have a bone marrow test again this Friday. It also means we have to go to clinic today to get blood work and chemo so that tomorrow will be easier for Reagen. Splitting it up into two trips is certainly less convenient for schedules and the like but it will make Reagen more comfortable in the long run. When she has to get put to sleep, she's not allowed to to eat or drink prior to the procedure which is tough on anyone but more difficult for Reagen while on steroids.
The week at home has been pretty good. Reagen has ben up and down, but mostly in a good mood. Her energy level has been zapped and that stinks for a 7 year old. She does everything we ask her as far as meds and keeping herself healthy, she really is a good little girl. The steroids have not been kind to her, but compared to last time she is much better off.
As soon as I get some results back, I will update the site. Thanks for checking in on us.
Rob, Vicki & Reagen
Sunday, February 22, 2009 6:42 PM EST
One down, too many more to go to count...
So far Reagen's treatment seems to be working. We got preliminary results from Friday's bone marrow test and it showed that the cancer cells in Reagen's marrow has declined from 84% to 12%. This is the best we could have hoped for. This should mean that we are set to stay on track with the treatment plan we set with the oncology team last week. We will hold onto this win for the rest of the weekend, but much like a football team, it's back to work on Monday for the next opponent. "Just win Baby!"
We should be home all week until chemo and labs on Friday if we can stay healthy. Vicki and I are working on schedules and workspace that will allow us both to continue working at almost full capacity. We will also meet with school this week to set up Reagen's educational needs so she doesn't slip behind. We need to maintain a "normal" as possible life so Reagen doesn't feel as though she is to blame for anything being different. She has already asked me why she makes people cry and thinks she did something wrong. We have assured her it is nothing she has done, but Vicki and I will keep our self pity to ourselves and do our best not to transfer any of our anxiety to her. She is extremely perceptive and you can't really slip anything by her.
Saturday was a great day for Reagen, she had a lot of energy and was able to enjoy some time with friends and her almost usual routine. Today was much more difficult for her. Her back and legs are very sore and the steroids are starting to take hold though she has remained pleasant. She has had to take a few naps, but is doing okay.
All three of us are already sick of the meds routine and sitting around the house. This is the part of treatment that most people don't see. The daily grind of this treatment sucks. It's not just when you are at the hospital or clinic, but 2 -3 times a day for meds that treat the side effects of the the other meds Reagen gets from duPont. We were so happy to be away from this part of our life and everything comes rushing back too quickly. The advantage now is that we know how to help Reagen better and we take comfort that we know what we are doing and can keep her as comfortable as possible.
We have one win under our belt and we will use this to get us to the next win. It's a long road ahead, but we are one step closer to the finish line. We know how to win, we just need to repeat the process one more time than we thought. If anyone can do this it's Reagen.
Thanks for checking in on us,
Rob, Vicki and Reagen
Thursday, February 19, 2009 4:35 PM EST
Back to work...
Heading back to work tomorrow. Reagen will have a very long day at the hospital, but if things go well, we should be home and in need of a long rest. We hope to get some info tomorrow and also over the weekend that will show Reagen's body is responding to treatment and that she is headed towards remission.
Today you could really see the effect the treatment is taking already. It's not just the chemo, but it's the other meds she has to take to fight the side effects. Some of these are as bad as the chemo and the volume is just stressful. I hate hovering over her to get her meds done, and she hates it too. It's probably the worst part of treatment. It will not end either. It continues throughout treatment and even a little beyond. It sucks, to be frank.
I think we are all a little anxious about tomorrow, but 24 hours from now we should be home and resting. There may even be a little self medication for me and Vicki if we get some good news tomorrow night.
On the light side Reagen is the new owner of her own cell phone. We thought this might be a good way to keep in touch with family and friends, and she has unlimited texting. If you want to send her a message or call, let me know and I'll get you the number. (I don't want to publish it here on the net)
Please keep Reagen in your thoughts and prayers for tomorrow and hope for a non-eventful day. She could use a break. We are strong. We will let you know how things go after we get settled tomorrow or Saturday.
Be well, be lucky!
Rob, Vicki and Reagen
Tuesday, February 17, 2009 11:25 AM CST
Heading home from the hospital...
Looks like we are heading home today. Reagen has okay counts to go home but can not be around anyone sick. She had to have chemo in her thighs just a few minutes ago, but did a great job. She needs to be observed for a bit and we need to pack but we can be home in a couple of hours. She is working so hard to do everything she needs to in order to through this. She has had a little trouble swallowing pills, but we are working with her, and she is trying really hard, probably a little too hard.
Vicki and I are doing okay and will settle Reagen in and then take care of our work and home stuff that has been on the back burner. Things are nice at the hospital, but always nicer at home for the most part.
Next Steps...
We will be at home until Friday this week if all goes well. We will back at the hospital on Friday for bloodwork, another bone marrow test (this should show if Reagen is responding to the chemo and how well), spinal tap chemo and then to the outpatient clinic for more chemo. Again if all goes well we should be home Friday night for a long restful weekend. The exception to that is that we will be anxiously awaiting the preliminary return of the bone marrow tests. This IS A BIG DEAL. It isn't as if it's the only thing going on with Reags, but it will provide us with an indicator of where she is and may be headed. The news wether good or bad will not determine a win or loss, just a change in therapy or a stay the course path. Obviously we are hoping to see progress towards remission which is a small victory, but we will take it. I will let everyone know how Reagen is doing and if I do get some news over the weekend I will post it. Most likely it will be Monday, but the team here really looks out for us and may get us some info over the weekend. They have truly been great partners in this fight.
This is a long fight we have in front of us and we appreciate you helping us get through it. We know it will be long, but we have seen our Bear (Reagen) on the other side of this once and I can tell you it is worth every single ounce of energy we put into it, and that you put into it. There is no reward greater and we will get this done for her and will do what we have to on your behalf for her. Reagen knows that you are pulling for her and that you are behind her.
Be well, be lucky,
Rob, Vicki and Reagen
Sunday, February 15, 2009 11:57 AM CST
On our way...
The initial shock of Reagen's relapse is starting to ease. (at least during the day and when we are busy). She is, as always our strong little girl who has excepted everything she has been dealt whether fairly or not. She is also our inspiration. We find ourselves in a situation where we are again amazed at the outpouring of friends, family and strangers who are there to help. It's a shame the world can't work the way it does when a child is in crisis, it would be a much better place to live for all of us.
Reagen has not had any more bad news since we have started. Her numbers are actually okay and in some cases improving. ( I won't educate you in the world of cancer, but numbers are very important to a cancer patient and tell you what is going on inside the body, we pay very close attention to numbers. Numbers will be described as good, bad or steady and currently they are bad, but improving)
We may get an early release from the hospital if her numbers continue to improve at this rate. I know things have sounded a bit desperate, but unfortunately we are in some areas, but this is what we have been handed and now we need to move forward and forget about what is fair and unfair. There is one thing that is important and that is Reagen's survival and that is our focus. It's so much different than last time and we need more chemo, stronger chemo, more patients and overall more hope and more fight. As a team (Doctors, nurses, family, friends etc) we will have what we need to beat this and beat it for good. This is the goal that has been set for Reagen's case and I'm sure that we will achieve our team's objective.
Again we want to thank everyone for their thoughts, prayers, text messages, voicemail, emails and love for our family. We may never be able to repay you or in some cases even thank you for your kind gestures, but please know that for every thoughtful thing you do we are touched and healed a little bit more. We know we have a responsibility to serve Reagen and also serve her in your honor and we will not fail you.
Monday will be a busy day and we will be making forward steps towards progress. As the situation changes I will update.
Rob
Friday, February 13, 2009 7:48 PM CST
Long Day...
I updated this earlier, but lost in in my haste. I'm sorry, I know a lot of people are waiting to see what is happening. I'll do my best.
Reagen had a great day at home yesterday, you wouldn't even know how sick she actually is. We did find out that it is the same type of leukemia which is the best case scenario.
She had a few special visitors from school and her Mom-mom, Uncle Bub, Mi-Mi and Pop and Aunt Lisa and her cousins as well as some neighbors; She had a pretty busy day.
Today started out at 5:30 am for the ride to the hospital. Things went smooth and Reagen was whisked off without a tear or fear for some sleepy gas. She is very brave. She had a port installed under her skin for chemo and blood access and she had spinal fluid removed and tested. She also had chemo injected into her spin to protect her cns (central nervous system).
She came out of surgery and was admitted and ended up taking a nap and has been up and down all day as it has been pretty tough on her.
Vicki and I met with the oncology team to review the treatment plan. It is aggressive. It is also very scary as to what we will have to expect the next 2+ years and that is if things go well. If things don't go well we do have some options that we are looking at now just in case. I really don't want to go into specifics without giving you all the information, but they did not give us any guarantees.
We do know that Reagen is going to get hit hard and we are scared to death for her. Unfortunately we don't have any options to avoid this if we want her to get the treatment she needs. We found out that Reagen will also be out of school for a year (we did not tell her this yet because we know she will take it very hard). We will ease her into it as needed. It is absolutely killing us inside. My heart breaks just writing this.
I want to paint the best picture I can but I don't know how yet, it's day by day. We have not had any bad news and this is a blessing and something we hold on to as hope. Reagen is so strong and she pulls Vicki and me through this time and time again. We will never throw in the towel and we will fight for her all the way, but I have to tell you we are hurting inside like never before. Everything this time is.... I can't really explain it, I'm sorry.
We want you to know that Reagen feels the love everyone is sending her and we are too and we all need it now more than ever. We can't be a hero here and we also need a little luck.
I am emotionally drained and need to re-group tonight for the fight that we have tomorrow. I will try and update and paint a clearer picture when I can focus.
Rob
Thursday, February 12, 2009 6:54 AM CST
I don’t know where to start…
Our hearts are broken and we are very scared and saddened by the news that Reagen has had a relapse. Our fears were confirmed on Wednesday though we thought there was a problem Monday night when our regular pediatrician referred us to our Oncologist at duPont.
I know many of you are asking the same question How can this happen? Reagen was 20 months off of treatment and relapses don’t usually occur at this point. We don’t really know the extent of this yet and we should find out this afternoon. We do know that Reagen will have to endure chemotherapy treatments and we are expecting a time frame much like the first round (two and a half years).
We are pissed off, scared, and very sad for this to happen to our little girl. She has already endured so much and came through so strong. Our hearts are literally broken right now. We had so many plans as a family to do things and live our happily ever after but it doesn’t seem to be in the cards for Reags right now.
We have tried to do our best to protect Reagen from the news until we knew exactly what she was in for. We want to be honest with her and we did tell her that her leukemia was back. She is so strong! She is also a little girl who is scared. When Vicki and I told her she cried a little and asked, “Am I going to die?” We said no and this is the truth as we have been told at this point. She also asked if Mrs. Guy (her principal at school) would be mad because she was missing school. She loves school (obviously she gets that from Vicki). She is also sad about her hair.
We know we have a ton of support out there from everyone at Vicki’s office, our family, friends, hospital staff and even our dry cleaner who will be devastated by this news. I know to say thank you in advance because during this we will be focused on Reagen, but know we are appreciative for every call, note, text, prayer and thought that you send us. We need this support right now because Vicki and I and mostly Reagen are really hurting. Be assured that we will pull ourselves together and take care of Reagen but I can tell you it all comes with a cost and right now it’s a piece of our heart that feels like it has been ripped out of our chest.
Next Steps –
We were able to bring Reagen home from the hospital last night so we could spend some time at home as a family and get our attack plan ready. We will go back in early Friday morning and Reagen will have a central line put in. We are pushing for a port this time so she can enjoy swimming and showers and normal kid stuff as much as possible. Reagen will also have chemo injected into her spine to protect her central nervous system from any further damage. Other than that we will work with our duPont team to do everything possible for Reagen. She is our priority, our love and our life.
I will do my best to update this site.
Rob, Vicki and Reagen
Friday, June 13, 2008 8:23 AM CDT
One Year Off…
One year off of treatment has come and gone rather quietly (as you can tell from our infrequent updates to the site). Reagen continues to do very well and is growing up to be a normal little girl. Her parents feel she deserves this and more after what she has been through and we do our best to give it to her without letting her know. She doesn’t seem to remember too much about some of the procedures or the two and a half years of treatment she went through when we ask. We don’t actually ask her too much about it, as we would like to forget as well. However we don’t forget and I think that makes each day a little more fun and a little less stress filled even within the daily routines of our busy lives.
Reagen’s last visit to the clinic was yesterday and her numbers looked wonderful. They were the type of numbers you would expect in any 6 almost 7 year old. Of course most 6 year olds don’t even know what numbers I’m referring to and that in and of itself is a good thing. Interestingly, Reagen’s tonsils are growing back. Sometimes the chemo is strong enough to get rid of kids’ tonsils forever, but hers are back I don’t know if that will turn out to be good or bad, but at least it’s normal.
Reagen will now have to visit the clinic once every 3 months for blood-work and an exam as opposed to every month. She is not cancer free yet, but a whole heck of a lot closer that she doesn’t need to be monitored as closely. We are happy for her that these trips are less frequent, but there is a certain piece of mind that comes with those monthly visits and being reassured by the docs that everything is as it should be. Each visit brings us closer to the finish line. Each visit also brings with it a bit of survivors guilt sometimes too. Every visit I notice a new family, a new child or a father with a freshly shaven head and I just know that they are at the beginning of this fight. I also always notice the wonderful staff that is happy to see us and happy to see Reagen growing up and getting bigger. They spend a little time with us and then I see them back to serious work and quite conferences to discuss treatment and curve balls that cancer has thrown to some of the kids. I see that they now have new children (and parents) to comfort and heal and that their fight never ends. It’s an amazing thing they do. It’s like they rush into a burning building pull a family out and then keep going back in regardless of success or failure.
This summer will take us to the shore and a big birthday party in July. Work will be busy for both of us and each day we will remember how lucky we are. Our family is tighter and stronger then it has ever been and I think we all rely on each other and truly enjoy the company of being with the family. This is a great feeling and we would have never have gotten here without the love and support from all of you.
Have a great summer,
Rob, Vicki and Reagen
Wednesday, December 12, 2007 11:06 AM CST
Milestones…. (2 big ones)
Yesterday we had our six month clinic check up. Everything looked great! We were also informed that the first six months are prime for relapse and that getting past this point is good reason for celebration. I’m sure Vicki and I knew that at some point, but we must have pushed it to the back of our minds because we were both a little surprised. This kid who has been through hell is currently enjoying the holiday with good health and bounds of energy. Yesterday was the only day she missed from school and that’s only because we couldn’t get her liver appointment moved back from the morning. (That went well too)
Reagen is a very tough little girl, don’t let the shy act fool you. She wanted her ears pierced and we made her wait until she was off chemo for six months. Well yesterday was the day. Vicki and I were both cringing thinking she had no idea what she was in for. Surprisingly she did not shed a tear. She winced a little but didn’t hesitate to get the second one done. (see picures) I guess she has been through so many needles, operations etc that this was really nothing to her. She is one tough kid.
We are enjoying the holidays with good health and family fun. We wish the best to everyone out there keeping up with Reagen. Have a Merry Christmas.
Love, Rob, Vicki and Reagen
Wednesday, October 10, 2007 9:03 AM CDT
Living the Happily Ever After…
It has been four months since Reagen has ended chemotherapy treatments. A lot has changed all for the better. No meds, better sleep, more worries sometimes (Just for me and Vicki) and one very happy little girl. Reagen has regained much of her energy and sometimes reminds us of the energizer bunny, until she finally stops for a minute and then she goes out hard and fast. Naps are a thing of the past for our little first grader and they have been replaced by monkey bars and jump rope. Fevers have been replaced by bumps and bruises and they are usually taken care of with a kiss and maybe a band-aid.
Vicki has been able to get back to a semi-normal work schedule and will actually be heading off to London in November. I have been able to settle into a normal schedule (for me) and able to set appointments with clients and keep them. Summer was full of trips to the beach, swimming and finishing up the last of Reagen’s meds.
School started in September (tearless and fearless). Reagen has been doing well and has enjoyed school and riding the bus. She even asked to let the bus drop her off with no one waiting at the end of our driveway. She still likes to play shy, but has made some new friends and is very independent in her school environment.
Tomorrow is Reagen’s 4th monthly check-up and we expect good numbers and continued good health. Every month (day) we go without bad news gets us that much closer to being 100% cancer free. We enjoy every day as much as possible even with life’s bumps. I think we all realize how fortunate we are and the little things don’t bother us all that much. We are not the Nelsons by any stretch, but life for the Amands in our form of the modern day family with cell phones a blazing is pretty good. (I’m sure Reagen will have her own within the next couple of years)
We always think of the many people who have reached out to us in our time of need and feel obliged to let you know that we are doing really well thanks to you. Without the support we had I can tell you we would not be in this position. We are extremely grateful.
With Love,
Reagen, Vicki and Rob
PS – Check out the new pictures someone looks really healthy!
Thursday, June 14, 2007 4:57 PM CDT
And they lived happily ever after…
This seems like an appropriate ending to Reagen’s journey. She has been both the Princess and the Knight in shining armor. Today before her last procedure she even played the court jester. She has been through so much and she worked very hard for her happily ever after.
Today was a quiet ending with no crazy fan fare or long goodbyes to our friends at the hospital. Everyone was very nice and genuinely happy that Reagen was better and moving on with her life. We had our first ever pre-op nurse and she reminded us of the bed we were assigned the day this all began in April 2005. (She put us in a different bed) We were reminded of the many times we were there as a family scared of what was happening but pushing on because we had no choice. Today was relaxed but given the choice we would not be there. (This was approximately Reagen’s 20th procedure like this.) We enjoyed an event free procedure. Reagen went back without a fuss with Vicki smelled some cotton candy in the mask and out she went. She slept for just over an hour after she was done, woke up pleasant and quiet, got dressed and walked out of the hospital like nothing happened. Other than the two band-aids on her back and the one on her hand from the I.V. you wouldn’t have even known she had surgery. We had lunch with Mi-Mi, Pop and Mom-Mom and were entertained by a very giggly little girl. It was very “normal” and we appreciate that a lot more now than 26 months ago.
We realize that this is not over and that real normal is still years away. Reagen’s immune system will not be fully recovered for 12 months. She still has to take one med on a daily basis for the next three months, but side effects are bad taste more than anything else. She wants to get her ears pierced, but that should wait at least 6 months due to the possibility for infection. Reagen will also have to have monthly clinic visits and blood work for the next 12 months, after that it happens only every 3 months until she is considered cancer free in 2012. We are happy to be leaving a world of hospital visits and chemotherapy and all the associated tasks, but it is a bitter sweet ending knowing that we leave behind good people (Doctors, nurses an staff who saved Reagen’s life) and other children who continue to battle to reach their happy ending.
Reagen (and her parents) could never have gotten through this without the never-ending support of family and friends (if you are reading this I’m talking about you). Each phone call, letter, present, stickers, note on the website, stuffed animal, kind word, and prayer has pushed us closer to this day. We are in awe of the kindness of people and humbled by your caring. Thank you.
Love,
Reagen, Rob and Vicki
Tuesday, June 5, 2007 11:19 AM CDT
“I want to thank all of the people who gave me presents and cards when I was sick” (Reagen Amand June 4th, 2007)…
The above was Reagen’s response to Vicki’s question of how she would like to celebrate finishing up her meds. I think she gets it as much as a five year old can. When she is older she will truly be amazed at how good people were to our family, I know that I am.
It’s a very surreal feeling right now. There is the joyous anticipation of getting done this part of our life and reflection on the pain and suffering we had to watch our little girl go through. We are happy to moving to a “normal” life but understand that normal will still have challenges.
Reagen will take her final chemo meds on Sunday. Vicki and I are planning a couple surprises, and a day at home with the family. Reagen will have her last day of school on Monday, so there is a lot of celebrating going on. Reagen will be going to day-camp this summer and she is very excited about starting there as well. We have a Dr. appointment on Wednesday and her final chemo procedure will be on Thursday. For Reagen it’s not too big a deal, mostly because she is asleep through the entire thing, it’s a little more stressful for us waiting to get the “all clear” from her test results.
I will keep the site going for a while to keep things up to date, but please feel free to call, stop by or whatever we would be happy to see or talk to everyone who has helped us through this challenge.
Love,
Reagen, Vicki and Rob
Sunday, May 20, 2007 6:45 PM CDT
The Marathon…
Reagen is doing well, her numbers are good and she is ready for her victory lap. We had our Dr. appt on Friday and Reagen is in good shape to finish treatment. We are not starting chemo until Monday and steroids will start on Tuesday. We wanted to stay on our normal schedule and we had a busy weekend planned. Reagen was honored to be the Leukemia and Lymphoma Society’s Team in Training hero for the State of Delaware for the 2007 season. As the “hero” she was asked to be present at some of the events, so we attended a pasta party on Saturday and helped hand out water to runners on Sunday. It was a good experience for all of us and we are honored to be chosen to participate.
We were asked to speak at the pasta party in front of the runners, and their friends and family about our experience and to say thank you to all of them for their efforts in raising money for the Leukemia & Lymphoma Society. Vicki took on the challenge and wrote and delivered the below message to everyone. There were not many dry eyes when she finished. She was amazing and spoke with a comfort not many people could do when talking about something so personal. Anyone who knows Vicki understands how much she loves attention and the spotlight, which made this experience even more remarkable.
The Marathon
When Reagen was diagnosed with Leukemia in April 2005, one of the first things her oncologist said to us was, “This is a marathon, not a sprint”. In Reagen’s case, that comment had a very symbolic meaning. Reagen’s treatment will end on June 10, 2007, 26 months after it began. As you all know, a marathon is 26 miles. In thinking about how her treatment really has been like a marathon (without actually having ever run one), I would like to offer you this:
At the starting line, you might be thinking, “How did I get here?”, and that 1st mile may seem so foreign to you. I am sure a few of you will want to turn around and run the other way – I know we did. It may take a few miles to warm up, and settle in to a rhythm, but you will do that, because you know you have to in order to finish the race. Along the way, you will have some easy miles, and some tough miles. But you will get through the marathon with the support of your fellow runners, and your coaches, who have done this before. You will get through the marathon with your friends and family supporting you, and cheering you on from the sidelines. You will get through the marathon with people you don’t even know supporting you and cheering you on from the sidelines. And you will get through the marathon because you will. You will find that place inside you that you didn’t really know was there – maybe you have tested it before, but not like this. And you will be amazed at your strength, both physically and mentally. You may even cross that finish line a different person than when you started.
I ask you that as you run, and tick off those miles, you think of Reagen going through her treatment and getting closer to the finish with each mile. When you finally hit that mile 26, it may seem premature, but start your Victory Lap – you aren’t there yet, and it will still be hard, but in that last mile, reflect on all that you have done. Reagen is currently celebrating her Victory Lap – starting when she only had one month left, we constructed a paper chain, and each night after she takes her last medicine, she takes off a link. Each link has a note from a relative or friend offering her congratulations and encouragement. Reagen will cross her finish line on June 10th and remove the last link of her chain. As you run your Victory Lap, Mile 26, think of all that you have accomplished. I’ll bet you had your doubts, before and after the race, of what you could do, physically and emotionally. You have pushed you body to a place you didn’t think it would go, and you have pushed your mind as well. You have raised money for a great cause and more so, raised awareness. You probably realize what a small world it is – some of you had already had your lives touched by cancer in some way before you joined TNT, but if your journey is anything like Reagen’s, you have realized there is a whole other world out there made up of amazing people with amazing stories.
Just as I know Reagen will cross her finish line of her treatment on June 10th, I know each of you will do the same tomorrow. And as we say to her, we are really proud of you.
Monday, May 14, 2007 12:41 AM CDT
Countdown & Victory Lap….
Reagen would like to read a note from you. Reagen is counting down the last days of her treatment and we have built a paper link chain so she can take a link off every night after she has taken all her meds. We also had to mark the wall where it started, because she did not think that it was getting any shorter. We have taped messages cut out from her guestbook for some of the links and she really likes reading them each night. If you would like to have a message in the chain, please write it in the guest book and we will put it on one of the links.
As of today (May 14th) we have 27 days to go. I think we are all excited to get to the finish line. Reagen still has to get one last chemo needle in her hand next week along with one last round of steroids. She will also have one more bone marrow aspiration (2 needles in her back to check to make sure the Leukemia cells are gone) and another needle to inject chemo in her spine and test her spinal fluid one last time. We are thankful that she will be asleep for the final procedure.
Reagen is really doing well at the moment considering… Considering she is a little girl who is fighting a very nasty disease. I could write about the details of what she goes through each day, but it seems unnecessary to reflect on those because we do what we have to do and we actually find we are in a fortunate position considering…
We are told that it will take a few months for her energy to return to normal and her hair to start a normal growth cycle. Our family and friends who have taken this journey with Reagen will embrace each normal activity. She has lost so much of her childhood we want to celebrate every moment we are together, even the bad moments (she is a 5 year old). We are planning a pretty busy summer and are anxious to see Reagen come out of this roller coaster of drugs and sickness and just be 5. (6 on July 13th)
Monday, May 14, 2007 12:41 AM CDT
Countdown & Victory Lap….
Reagen would like to read a note from you. Reagen is counting down the last days of her treatment and we have built a paper link chain so she can take a link off every night after she has taken all her meds. We also had to mark the wall where it started, because she did not think that it was getting any shorter. We have taped messages cut out from her guestbook for some of the links and she really likes reading them each night. If you would like to have a message in the chain, please write it in the guest book and we will put it on one of the links.
As of today (May 14th) we have 27 days to go. I think we are all excited to get to the finish line. Reagen still has to get one last chemo needle in her hand next week along with one last round of steroids. She will also have one more bone marrow aspiration (2 needles in her back to check to make sure the Leukemia cells are gone) and another needle to inject chemo in her spine and test her spinal fluid one last time. We are thankful that she will be asleep for the final procedure.
Reagen is really doing well at the moment considering… Considering she is a little girl who is fighting a very nasty disease. I could write about the details of what she goes through each day, but it seems unnecessary to reflect on those because we do what we have to do and we actually find we are in a fortunate position considering…
We are told that it will take a few months for her energy to return to normal and her hair to start a normal growth cycle. Our family and friends who have taken this journey with Reagen will embrace each normal activity. She has lost so much of her childhood we want to celebrate every moment we are together, even the bad moments (she is a 5 year old). We are planning a pretty busy summer and are anxious to see Reagen come out of this roller coaster of drugs and sickness and just be 5. (6 on July 13th)
Sunday, April 29, 2007 10:26 AM CDT
“I don’t wanna be sick anymore”…
Those were the words from Reagen as she is finished up her next to last round of steroids and chemo. As good as last month went, this month got harder for her. We attribute most of that to the fact that her treatment was increased for the chemo and steroids. She had a pretty rough time and it was hard on Vicki too. It started on Tuesday after chemo with vomiting and a fever. Reagen kicked that by Wednesday, but it took a lot out of her. Most of the day Friday Reagen was lying around and moaning just to try and make herself feel comfortable and there really wasn’t anything Vicki or I could do to comfort her. Reagen took all her meds like a true champ and didn’t complain. Saturday she started to feel much better, but still didn’t feel like walking or playing much. Sunday morning she just felt sick. That’s when she hit us with the line above. You feel so powerless in this situation and as a parent it is frustrating.
The month itself seemed to go fast and Reagen was feeling good. She did start to lose her hair again about two weeks ago, which we understand, but it just adds insult to injury for her. She is so close to the end and we worry that something like this could hurt her spirits, but she seemed to take it in stride.
The other good line Reagen had (with no prompting) was when we were talking about being almost done with treatment she said “and bye bye cancer”. We don’t shy away from saying cancer around her, but we don’t make a point of it and I’ve rarely heard her say it so we were both a little surprised in a good way to see the fight in her be specific towards cancer as opposed to the treatment.
We know we have a lot of people pulling for Reagen to finish this once and for all and we are very appreciative. She is so close to being finished we have to remember to keep our guard up. No fumbles here. Reagen has fought a very difficult battle that even though I am witness on a daily basis, I cannot imagine what it must be like for her. She is truly an amazing, tough as nails little girl, and we love her for it.
Monday, April 2, 2007 8:22 AM CDT
And then there were two….
Two more monthly chemo treatments and steroid pulses to go. Reagen did such a great job this month, she is absolutely amazing and reminds me a lot of her Mother when things get tough. The two of them really worked together this month to get through. Reagen really just wanted her Mom and Vicki did her best to balance work and caring for Reagen as best she could. The results equaled probably one of the better treatment weeks we’ve had.
We do our best to be positive during this long treatment, but I can’t stand to think about the weeks Reagen is on treatment. It is unfair and honestly it pisses me off that she has to lose a week of her life every three weeks. She is incredibly strong, but you would have to see her during the week to remotely comprehend what must be going on inside her. By the end of the week she looks pathetic and beaten and our hearts ache to help her feel better, but most time we are just there to be witness to her fight. Sometimes she says she just feels bad all over and she can’t even sleep to escape the feeling. She has glimpses of her normal self and when she is happy it is so sincere even through the haze of drugs she is on to combat the steroids and chemo. By Monday she still has a little fog, but fights through and is happy to go to school and see her friends like nothing happened.
We discussed end of treatment with her Doctors last Monday and they gave us the remaining schedule and more light at the end of the tunnel to focus on. We talked about throwing away the remainder of Reagen’s meds when she’s done in June and we also discussed how much more energy she is going to have after they work their way through her system. We try to make the most of each day even during treatment and we enjoy watching Reagen and her confidence grow as we get closer to finishing this chapter. We continue to be thankful for the position we are in and the good health we have. We know all too well how quickly things can change and we also know of other families that are not as fortunate and our hearts go out to them as we heal.
Thank you for checking in on us through this long journey.
Thursday, March 1, 2007 9:40 PM CST
March 1st (Happy Birthday Mom-Mom)
Reagen Rocks….
This kid is a handful. She is doing great and we love having her in such a good mood. Reagen had a spinal tap (chemo in her spine), her regular chemo and started steroids today, so it will be a bit of a long weekend for her, but after this only three more monthly pulses to go.
We are really looking forward to the end of this. You know when people on the operating room staff comment how big you daughter is getting, you’ve clearly spent too much time with them. It will be two years Reagen has endured this hell in April, time flies. We are looking forward to this ending soon, but we are not wishing the time away, we know how quickly you can turn and long for the days of normal. Right now, Reagen is alive and doing well, and right now that is still our normal.
Reagen continues to do well in school and gets great support from the staff there. She is making friends and having play dates and we are letting go a bit so she can explore her freedom. We want to see her grow into the independent spirit we know she has, but has been squashed a bit by cancer. We love to see her playing with friends and cousins on her own and just being a kid. Our joy is just watching her grow up. We see it with a perspective we would not wish on anyone, but we embrace it so I think we appreciate the little things much more than we would have if she didn’t have to endure this challenge.
Thank you for checking in our family, it is much appreciated, more than we could ever express.
Love,
Rob, Vicki and Reagen
Tuesday, January 30, 2007 4:02 PM CST
Time is Flying
Sorry the site has not been updated in so long. It’s been a good ride. The holidays were great and for the most part, things have been moving smoothly. Santa made a stop at Mom-mom’s house too (see picture on front page) Reagen did have a bump in the road a couple weeks ago that put her in the hospital for several days, but she fought through as always and got out of there in three days. She got a little red transfusion, a IGG transfusion and another red transfusion. After that she was good to go. I really understate what she goes through, but the details break my heart to witness and I don’t feel the need to re-live the experience through this medium. I think the time is better spent enjoying the good days we have and looking forward to the future.
I have a ton of great pictures that I need to update. I’m putting a few up now and you will notice one in particular of Reagen and her friend Lia. It may be the last picture you see of her with a hat on. She dumped it the day after her Christmas concert at school. She really enjoys her bands that Vicki has been buying her.
Reagen continues to do well in school in spite of missing a good amount of time due to chemo and colds. She is happy to head down to the bus everyday she goes and seems to love it.
Yesterday Reagen had chemo again and her numbers looked okay. She only shed a tear or two when they gave her the needle in her hand and then she shot right back with a smile. The last time she got chemo she was actually laughing while they were pushing the chemo in. She is really an inspiration.
She now has four more treatments to go and two more spinal taps. We are all looking forward to being done with this chapter of our lives. It will be a bit scary for me and Vicki after she is done, because the first six months after treatment are the most likely that she could relapse. The good news is that this is only our burden to endure and the only thing she has to worry about will be how fast her hair grows.
Our thoughts now turn to other families who are still enduring or just beginning their journey. We offer our thoughts and prayers for our good fortune to be theirs.
Love,
Rob, Vicki and Reagen
Monday, December 4, 2006 8:32 AM CST
Enjoying the Holidays….
I’m very happy to report that Reagen is doing great! She had to have her spinal tap pushed back a month due to a cold that would just not go away, but she has kicked it and is ready for her next round of treatment. She started off the week not feeling too well and a trip to the clinic to help her get past the cold, but she ended the week on a high note, feeling good and playing like crazy.
At the end of every cycle when most of the harsh chemo is getting out of her system, Vicki and I get a glance at what life would (will) be like when she is finished with her treatment. She just looks and acts healthier and happier. We focus on this because we know that after seven more treatments (six after this week) we will have her back to normal. We are grateful everyday for the support we get from our oncology team, friends and family to get us to our final goal.
The holidays are fast approaching and our plan is to get caught up in all the things that are happening around us. All the excitement of a normal five year old is spreading through our house and it is a wonderful feeling. Reagen is really getting into Christmas this year and chemo or no chemo we are going to enjoy it.
Thank you for checking in on Reagen and for your support during this l o n g journey.
(Happy Birthday Vicki!)
Friday, October 20, 2006 10:05 AM CDT
You Can’t Tell From the Smile…
What a difference a year makes. This time last year we were struggling through Delayed Intensification and the chemo had hit Reagen pretty hard. As you can see from the picture above she still has the same smile. She has fought all year and is doing well because of it. She has stayed on track with her therapy and we are starting to see the light at the end of the tunnel. She still has 8 months of treatment to go, but compared to where we were this time last year things look a hell of a lot better.
Reagen is loving school and is doing well. Her teachers and support group there from the Nurse to the Principal have been wonderful and have made a very positive impact on her. Reagen’s confidence is improving every day and she loves to ride the bus. She asks to take it home all the time and has even asked if she could walk down by herself to go to school.
We were told of potential late term effects of her cognitive abilities due to some of the chemo treatments Reagen gets in her spine. She was approved for testing to establish a base-line and she came through with high marks. She has not achieved genius status yet (even though her Mom & Dad thinks she is), but she scored very well. She will have to be tested again in two years and regularly after that to determine if there are any late term effects from her treatment. She does suffer from higher than average levels of anxiety more than other kids her age, some of it based on her natural make-up (being shy) and some from the last year and a half of treatment. We (Drs. & Parents) think that this will diminish with more social interaction at school as her confidence builds. We will be keeping an eye on her though.
Overall we are feeling very lucky and enjoy each day we are blessed to have each other.
Happy Halloween!
Wednesday, September 13, 2006 3:18 PM CDT
School Days…
Our girl is a big girl now. School started last week and after an emotional goodbye at the bottom of the driveway the school bus whisked off our little girl and sent home a kid in kindergarten. As much as we didn’t want to let her to go we are very thankful that she is healthy enough to start to be a normal kid again.
Reagen had a great vacation before school started and was really great to be around. Even the 8 hour drive back from New Hampshire was fun. She slept a good part of the way, but only gave me a couple “are we there yet’s” just for fun. She was also great on our trip to South Bend. She loved taking off and usually fell asleep during the flight. She did not always like the seating assignments and said that “when I get my own plane, I’ll sit where I want”.
Monday was a normal school day and she came home full of smiles. Tuesday was chemo and a hard day for her, but she has been a champ through the whole thing. We have switched up some of her meds during steroid week, and it seems to be helping but she is very tired and sleeping a good bit. Her numbers came back good and everything seems to be moving along well. We will keep our fingers crossed.
We hate to look too far forward but we do have a final chemo and test date of June 19th. We should be done with the exception of many check-ups and blood work monthly at that point. We then cross our fingers, pray, and worry that the cancer is gone for good and that she doesn’t suffer from any long term effects from the chemo. I guess that is why we don’t look too far ahead.
This kid still has a lot of fight in her and she is doing great.
Tuesday, August 22, 2006 11:46 AM CDT
First and ten…
As football season approaches so do the last 10 months of treatment for Reagen. She just finished up a week of chemo (monthly VCR and her spinal) and another week of steroids. This past steroid treatment went better than last month, but the medication still needs to be tweaked a bit. We have another opportunity in three weeks unfortunately, to get it right.
Overall Reagen has been doing well. She had some fever issues last month, but she fought through like a champ. This month is going to be a bit crazy, but she is really looking forward to everything we have planned. We started off by finishing up her birthday presents with bunk beds that she loves. It’s a little harder to tuck her in up there, but the 50 or so stuffed animals keep her pretty snug. We head off for vacation later this week and will be visiting the Water’s Edge Resort for a couple of days on the way to Boston to do some swimming. In Boston we will be busy with friends (Cheryl, Scott Jeffery and Alex) for a couple of days. Probably more swimming there (love not having the tubies). Then we head off to Meredith New Hampshire to stay at Lake Winnipesauke with Candy and Bill. No doubt there will be water activities including margarita distribution. That’s it for August.
Reagen starts school September 5th in the morning kindergarten class at French Creek Elementary. She also starts riding the bus too. Then the Friday of her first week she is on a plane to South Bend for the Notre Dame / Penn State game. She has a VIP pass to a birthday party for her friend Olivia before the game and tickets to the game for after the party. She is excited for the connecting flights because she gets to fly on two planes. We are already working on a note from the Dr. to carry on her chemo. Security should be fun.
When we get home, it’s right back to reality and the clinic for another round of chemo and steroids. We won’t even think about that until the night before.
Thank you for checking in on Reagen.
Wednesday, July 26, 2006 5:00 PM CDT
Another Month Closer…
One more down and we are closer to the end of treatment. Of course that is a year away, but one step at a time. Reagen is doing very well. The steroids were again pretty rough on her, and having the electric out didn’t help. Mi-Mi, Pop and the Hartman’s were lucky enough to have the pleasure of hosting Reagen and Vicki. We think it helped though. Steroids ended on Saturday and Reagen has jumped right back to where she started. She has been so tough. Above is a picture of her about to get Chemo and some other pictures we took at treatment are on the photo page.
Below is a poem I came across last year. I never posted it and I don’t know why, but I thought it was appropriate.
I watch you playing
Without a care,
It’s hard to believe
The cancer is there.
You look so bright,
So happy and well,
If someone new met you
They couldn’t tell.
Your strength is amazing,
Your courage so strong,
You’ve fought this disease
So well for so long.
It’s from your strength
That I draw mine,
I know you’ll come through this,
It’ll just take time.
Carry on smiling,
I will too,
Through the hard times
I’ll carry you.
You are my world,
The air that I breathe,
I know in my heart
You’ll never leave.
Keep strong my love,
The battle has begun,
But with your strength
It will be won.
Author: Unknown (I suspect a parent on this journey with their child)
Wednesday, July 12, 2006 4:44 PM CDT
Happy Birthday Reagen!!!
Where did the last 5 years go? Reagen is doing great and we have enjoyed a great month since our last week of treatment. Reagen continues to give herself her meds and has been feeling great. It is so nice to see her like this and we all appreciate it a little more since we have seen her on the other side. Reagen had a great party complete with a water slide, water-guns and water-balloons a little mud and a lot of water fun. We have been quite busy taking advantage of the summer without a central line and great weather. Vicki asked if our schedule was “normal”, unfortunately I have a hard time with that definition since April of last year.
Reagen officially turns 5 on Thursday. Celebrations will include school with a party after lunch featuring cupcakes. She will also be treated to a short visit (hopefully) to DuPont to have her Liver specialist take a look and make sure things are all okay. We may do a quick pop-in on Mom-Mom and then a picnic and baseball game.
Reagen has been in such a good mood we have really enjoyed this recent stretch of good health (3 weeks seems long). Happy Birthday Reagen! We love you.
Wednesday, June 28, 2006 3:08 PM CDT
The picture you see above is that of Susie Clark. She participated in a triathlon for Reagen. She was in Hawaii just recently when Reagen had just gotten out of the hospital with a virus. We are so proud and very appreciative. Thanks Susie!
Reagen is doing great at the moment. We finished a difficult week of chemo and steroids and Reagen bounced right back. The past week was tough on her though, she just couldn’t get out of a rut. She cried quite a bit and could not snap out of it. Her sparkle is back and we are glad to see it and her looking and acting normal again.
We should be good for the next three weeks.
Sunday, June 18, 2006 1:59 PM CDT
Father’s Day 2006…
Another great Father’s day, and a great time to reflect on the past year and how far Reagen has come. One of the biggest changes was setting up the pool and swimming on the deck. We definitely couldn’t do that last year. Meds are breeze (compared to last year) and Reagen has been in a great mood and health. Breakfast for Dad , a card and key chain (#1 Dad) that Reagen made at school. We were swimming by 9:45am.
Reagen finally went back to pre-school this week. She goes on Thursday and Friday and loves it. She keeps her hat on the whole time, but other than the hair thing, things are pretty normal and she loves playing with the other kids. We think that going to school has really helped her and we have seen a big change just in the past few days. She is also very excited about her birthday (3 weeks) and has started laying out plans for the big day.
We head back to the hospital Monday for chemo and Reagen starts her steroid pulse. It will be a long week, but this time next year I hope no one is even reading this because Reagen should be finished.
Happy Father's Day!
Thursday, June 8, 2006 3:53 PM CDT
Battling Back…
This kid is getting back on track. No temp for 48 hours and starting to feel like herself again. Her numbers are still showing signs of fighting a pretty bad virus and chemo is still off until the weekend. Reagen’s hair is also thinning out again. Looks like this will be the trend for the next 12 months.
Vicki is up and about and heading back to work (on her laptop). Tomorrow she will head into the office and Reagen and I will be fending for ourselves.
This is the weekend of Susie Clark’s triathlon in Hawaii. She is running in Reagen’s honor. Good luck Susie!!!
http://www.active.com/donate/tntgsf/SusieClark
Tuesday, June 6, 2006 12:14 AM CDT
Home from the hospital…
We are all home, but all still feeling pretty sick. The girls have it the worst. Reagen’s temperature seems to be getting better. She has only needed Tylenol every 12 hours instead of every four and the jumps have stayed well below the 102 plus numbers we were seeing. Reagen’s mood seemed to jump as soon as we were heading out of the hospital. She practically skipped out in between coughs. She is being treated for pneumonia with two different antibiotics and all her chemo is on hold until her numbers bounce back. We expect they will be okay on Thursday when we head to the clinic for a check-up.
Vicki is down. She slept almost 15 hours last night and is currently sleeping again with Reagen. I think it’s the best for them at the moment. The Amand house is under a full defcon 4 quarantine due to the contagious nature of this one.
We are home and we are together, we are pretty lucky.
Monday, June 5, 2006 5:37 AM CDT
In the Hospital…
Reagen has been fighting a low grade temperature all last week since she came off the chemo and steroid pulse. It did not go away this weekend and had gotten up over 102. We had to go into the E.R. Sunday and they asked us to stay over to see where her numbers were headed. She’s currently comfortable, but really wants to go home. I’ll update next chance.
Monday, May 22, 2006 7:05 AM CDT
Fantasy and Reality
It’s been a while I know, but preparation for a trip to Disney World is all consuming. We are back from a great trip with a very happy little girl. (Pictures coming soon) All the fantasy that Disney provides was a well needed break. Reagen rode some big coasters (Everest) and made a few Princess friends. She was a princess herself (most of the time, she is still 4). Mom-mom and Uncle Bub enjoyed the trip with us, especially the flying part when Reagen asked Mom-mom if the nose was still pointing up. Mom-mom does not like flying and this didn’t add to her love of flight. Reagen was treated to short lines and some special considerations thanks to Disney’s guest services. Vicki did an awesome job keeping everything and everyone organized, she is the best Mom.
Reagen’s comment on A Small World ride, “when is this ride over” while she was looking at the map for Big Thunder Railroad. Uncle Bub did ride Big Thunder with Vicki as his ride partner. He didn’t ride much after that bit of fun. (Uncle Bub is 71 by the way) We did get Mom-mom on Buzz Lightyear. (we had to drag her, then she went on again)
We bumped into some friends with their son and daughter that just happened to be there at the same time. What a nice surprise. It was like having a sister and brother for Reagen. It was great to catch up and the girls had a blast together.
Even though we still have just over a year of treatment, we are truly blessed to have had this time together.
Back to reality….
Monday we have blood work, check-up and chemo. Tuesday we have spinal chemo and we start steroids. She doesn’t deserve this and my stomach turns thinking about it, but hopefully it will be a memory soon.
This kid is a fighter, wait till you see what she does when she grows up, it will be awesome.
Love you Reags,
Mom and Dad
Monday, April 17, 2006 11:10 AM CDT
Happy (Belated) Easter…
It has been difficult to find the words to explain how we are at this time of the year. Reagen was officially diagnosed a year ago April 8th. This past year seems incomprehensible for a parent, not to mention what it must have been like for Reagen. Reflecting on what has happened and where we are can be both helpful and destructive emotionally. In the big picture we are progressing towards a healthy future together and feel extremely blessed to be in the position we are heading into the next 15 months of treatment. On the flip side of that, the calendar is a constant reminder of the nightmare that Reagen endured everyday of the past year. What was going on a year ago this date or that date never leaves your mind. We also always know that this fight is really never over. I still can’t come up with the words to explain this feeling even to myself. Reagen’s laughter and energy provide the best and only therapy to get through this period. She’s the fighter who has no idea how much she’s counted on to help us.
Reagen’s health has been very good. She has had a runny nose, but has been able to fight off anything major and stay on track with her protocol. Her hair has started to fall out again due to some changes in timing with her therapy. We were told that this was possible and that she won’t completely lose it in all probability, but no guarantees. She has not noticed and has had a ton of energy and positive enthusiasm. Again, she is providing the support that we need to know that she is headed in the right direction.
Easter was a nice break and Reagen had a lot of fun with no less than three egg hunts. I have posted some new pictures. Thank you for checking in on us.
Love Reagen, Vicki and Rob
PS – Please don’t forget to visit http://www.active.com/donate/tntgsf/SusieClark (Susie’s website) She has already raised almost $2,500.
Saturday, April 1, 2006 7:10 PM CST
I know it has been a while since you heard from us. It has been a very busy three weeks or so. Since Reagen’s “holiday” from taking any meds the first week of March, she has certainly had her share. She had chemo on the 7th and a steroid pulse from the 7th to the 11th. I have to struggle to remember how the steroids went – that is the good thing. The pulses are horrible for 5 days, but it soon becomes a distant memory. Partly because I think we try to make up for all the crap Reagen has to go through, so when she isn’t on steroids, we try to have as much fun as possible. Reagen did have a lot of pain due to the IV chemo for a few days in her knees and ankles, but fortunately it didn’t hold her back. On the 15th we flew to Phoenix to see our awesome friends, the Gaffneys. Of course, we took the rain with us (figures) but only for a day or so. We all had a great time – the traveling was a breeze, and the kids really got along. The adults had our share of fun – it was a long overdue vacation for all. It made up for the visit the Gaffneys made to us in the middle of one of Reagen’s steroid pulses in October! Reagen tells me that she really misses AZ and wants to move there – I am not sure she fully understands what that would mean!
The docs at DuPont continue to be awesome, including knowing how much I try to plan things (this is Vicki by the way), so they were “nice” enough to keep Reagen’s chemo on schedule – meaning, forget the week she had off, we will continue as before - so that meant back to the clinic this past Tuesday for chemo, and yes, another steroid pulse. We are on our final day….2 more doses to go….and it really doesn’t get any easier. I am looking forward to this pulse also being a distant memory. It is amazing to see how her behavior changes. We thought we could pattern it after all this time, but no two pulses are exactly the same. We also worked with a compounding pharmacy to mix up a concoction of her meds that would taste better, but it either didn’t work, or the steroids negated the whole effort. We’ll keep trying.
We want to thank the kids in the show choir at Boyertown Junior High West. They put on a Broadway Review Thursday night with Reagen in their hearts. Unfortunately, Reagen had a pretty tough day, and she and I didn’t make the show, but from some of the tape I saw it was great. Of course, I have to single out our niece Jess, for a beautiful performance, and for bringing Reagen into her show choir “family”. You are a sweetheart and we are very proud of you!
Thank you also to everyone who continues to keep Reagen in their hearts. I know she is on more prayer lists than we could imagine. She has also been “adopted” by quite a few people – thank you for thinking of her and for sending her cards, notes and stickers. As Reagen’s doctor first told us, almost one year ago, this is a marathon, not a sprint. Thank you for being there with us along the way.
Wednesday, March 8, 2006 9:47 AM CST
Dodged a bullet…
Liver is okay. Reagen is doing great and seems to be handling this steroid pulse very well so far. There is more to it than that, but Vicki wrote an e-mail to a friend of ours and it has much better detail than I can write so I’ll paste it below.
Please don’t forget to visit Susie’s site for Reagen…
http://www.active.com/donate/tntgsf/SusieClark
We did just get GREAT news yesterday - didn't look to see what was posted on the site. I asked Rob to update yesterday, but he is slacking! :) I know there are a lot of people interested, so I will see what he can do today.
We had a clinic appt yesterday - Reagen was put on hold for all of her chemo since the biopsy last wed. Her docs are conservative, and said they weren't expecting really bad news from the biopsy, but wanted to wait until they did get the results before continuing. Reagen was due for her IV chemo and steroid pulse last week. Anyway, we went back yesterday and found out that the biopsy looked as expected for a kid with ALL, with exception of some evidence of damage from the problems last May, which wasn't a surprise. The damage from that injury to her liver (from the meds she can't tolerate) is not progressing - that is why they call it an injury, not a disease. That might be confusing, but it is good news.
Her bilirubin levels are still up, although hopefully on the way down, and we are still waiting for the results of some lab tests to see if they can tell what is causing that, since now they don't think it is the liver. So we were able to give her the IV chemo (at 50% dose consistent w/ last month) and start the steroid pulse. Funny how good news translates into bad news for Reagen. "Hey, your test results came back great, now you can take lots of meds, get a needle, and feel like shit for the next week....."
We are headed to Phoenix a week from today to see very good friends of ours and we just told Reagen yesterday. She is pretty excited - we all are!
So now we are back on track, and the GI doc will be following Reagen until her chemo ends, but that is fine with us.
Monday, February 27, 2006 7:21 PM CST
Back to the hospital….
Team in Training for the King’s Trail Triathlon, an Olympic distance triathlon to be held on June 11th in Maui, Hawaii…
www.active.com/donate/tntgsf/SusieClark
Reagen is doing well, but she is still having some issues with her liver. She needs to have a biopsy done on Tuesday. This is not a planned treatment and not something we are looking forward to, but our doctors are conservative to start with and they are even more so with her liver. We saw a G.I. liver specialist last Friday that was set up by Reagen’s Doctor. We suspect that effects of the chemotherapy are to blame for the liver issues. We decided to go ahead with the biopsy since Reagen had to have a spinal anyway and it would be done while she was under general anesthesia. They will be looking to see if there is any scaring or cells dieing. As long as neither on of those symptoms is present Reagen will be in good shape moving forward. We will not have the results for another week after the procedure tomorrow. We will need to stay over night in the hospital tomorrow, but we’re trying to make it a special event so she isn’t scared. I think she likes staying a little bit. She loves the nurses and doctors, even though she won’t talk directly to them.
We spent most of the day at the hospital today getting an ultrasound (find the liver and marked it for tomorrow), getting blood work done (didn’t even cry, not one tear) and getting checked out by oncology. She is so brave and was in a great mood all day. We are really proud of how she handles everything. Pray for good test results.
On a high note a good friend of ours on the West Coast is raising money for The Leukemia and Lymphoma Society by running a triathlon in June. Susie Clark is crazy. Please go to her site to keep up with what she is doing in honor of our girl Reagen.
www.active.com/donate/tntgsf/SusieClark
Love,
Rob, Vicki and Reagen
Thursday, February 16, 2006 8:23 AM CST
Update…
Vicki and I had a chance to talk about where we are with Reagen and we realize how very fortunate we are considering the alternatives. We are also aware that Reagen she has been robbed of the healthy childhood that the majority of children have and that we both experienced when we were growing up. This is normal for Reagen though. She has adapted very well to hospital visits, needles and taking her oral meds daily, even though they taste horrible. She rarely complains and she is a joy to be with every day.
Our last steroid pulse worked out really well. We did walk on a lot of egg shells around her during the week, but compared to everything that has happened in the past she did great. Vicki still needed to stay home a couple of days, but when a little girl doesn’t feel well (chemo will do that to you) she needs her Mom. Let’s hope the rest of the treatments go as well. Only 16 more months. July of 2007 is just around the corner.
Currently Reagen is doing great. She has been in a great mood and has had a ton of energy. Other than the crew cut you couldn’t tell the difference between her and someone healthy. We have a couple of little problems with her liver numbers that we are looking into at the moment. We have had to keep checking labs (getting blood tests) since her last visit to the clinic. Her bilirubin number has been elevated and we have an ultrasound scheduled for Friday. Dr. Powell has noted to us that we want to be cautious with Reagen’s liver since her problems over the summer. He is “not in the mood” for it, and either are we. We actually had to cut her chemo down last month because of this issue. I guess we need to be reminded every once in while that Reagen’s condition is actually very serious. I think we get it and could do with out the little reminders like this, but our choices are limited.
It looks like Reagen will be back in school in April. We are excited and a little apprehensive. She was cleared to back in December, but we wanted to avoid the flu season. She will also start her new kindergarten in September, riding the bus. This, she is excited about. I wonder how long that will last.
We have a lot to reflect on and more to look forward to. We are very lucky and I think we do our best to enjoy each day a little more because of everything we’ve been through. Thanks again for checking in on us.
Love,
Reagen, Vicki and Rob
Wednesday, January 4, 2006 4:39 PM EST
Been a while and a lot has happened…
Reagen enjoyed a wonderful holiday season with family and friends. Reagen felt great all the way through the New Year and is heading into 2006 with great hopes and good health. We are very fortunate. 2005 was definitely a test for the Amands and our extended family and Reagen did a fantastic job getting us where we are today.
To catch up from my lapse in writing…
Tubies came out and the bathing started. I don’t think Reagen has ever been cleaner and she has really taken to the shower. Sometimes she gets in twice a day and sometimes with a bath in there just to mix things up.
The other big thing that has happened is that Reagen is now sleeping back in her own room. She is also sleeping pretty much through the night too. She had been sleeping in our room since our second or third stay in the hospital due to her need to be with us and also our paranoia of something happening to her, not to mention she hardly ever slept through the night either, and the two flights of stairs was taking it’s toll on all of us. I think the solid sack time is helping all of us.
Until yesterday Reagen had not been to DuPont since the 13th of December. She did have to go to her regular Dr. on December 28th, and wouldn’t it figure, to get a flu shot. We were a little stressed out about telling her, but when we did her response was “okay”. She is so tough. Other than that just some bloody noses now and then and an occasional cough.
Yesterday was our monthly clinic visit and it went pretty well. Of course there was an equipment malfunction and it blew out her vein the first time they tried to put the IV in, but things got going on the second try on the other hand and they were able to draw blood and administer the chemo through the same IV. Her numbers are good and we got a lot of questions answered about the future. In a nutshell we were told that we should be able to relax a little now and that the worst is over. We still need to be careful and try to keep her from getting sick, but as long as we can stay on track with the oral meds she takes (everyday), the monthly clinic visits, the monthly steroids (better, but not normal) and the quarterly spinal taps we should be clear by June of 2007.
I think emotionally we are still trying to comprehend what the hell just happened to us since April and how we are going to get back to “normal”. We are confident we’ll all find our proper place it just may take a little while for it to sink in.
I will still keep updating this site, but less frequently and let you get back to your life. Thank you for caring so we could get back to ours, because without you we could not.
Love,
Reagen, Vicki and Rob
Tuesday, December 13, 2005 2:55 PM EST
8 Months and Five Days….
But who is counting? Reagen has had her central line (her tubies) in a vein in the center of her chest for eight months. Today they are out. It is a huge step for her starting to feel normal again. Reagen has worked hard to take care of her tubies and protect them from anything that could hurt them. She worried about the tape and bag during every bath. She was always careful to keep them away from her shirt when she was changing clothes. She always made sure they didn’t dangle near the potty, and she was very careful not breathe on them when Vicki and I got sterile and changed the dressing. There were a lot of things she didn’t like about them, but they played a very large role in saving her life and she was careful to take care of them. She NEVER had a line infection or issue with them, and we are told that it is a rare occurrence. We are very grateful.
Today she had them removed. She was in a great spirits and the mood in the operating room with the nurses and doctors was truly celebratory. Everyone said hello and congratulations because they had all seen Reagen in much worse shape and I think everyone was proud of her and happy to see her come through this phase.
Reagen woke up in a very pleasant mood and has been happy all day. She has a lot of energy and is looking forward to a shower and a bath in a couple of days.
Merry Christmas!
PS – Thank you Mom-Mom and Mi-Mi for the tubie pockets!
Monday, December 5, 2005 8:31 PM CST
Moving Ahead…
Reagen has made it to her maintenance phase! It seemed so far away back in April, but it is here. We are not done with this fight by any means, but we are a lot closer to winning now. Today Reagen was a real trooper. She had pretty good numbers (enough to get her into this last phase) and she had her first chemo treatment in her veins. She really cried because she was scared. She had a good fight in her too, it took 3 nurses and Vicki to hold and administer the chemo in her wrist, but once they got the needle in she was fine. I talked with her and kept her attention so she didn’t have to watch and once I told her the needle was done she was fine while they pushed the chemo in. By the time we left the hospital she asked me to take the band-aid off.
Now, we can have her central line taken out. They are setting the schedule and we are hoping we can have it done by next week, but we won’t know for a few days. For now we are getting ready for a spinal tap tomorrow and we also start her steroid pulse for 5 days. It will be a tough week for her, but she is much better off than she was months ago. By Christmas she will be feeling good and should be able to enjoy the season.
Thank you for checking in on Reagen.
Monday, November 28, 2005 8:38 AM CST
Reagen is doing well…
Reagen has enjoyed several weeks of good health and great spirits. We have tried to take advantage of her good weeks and have some solid family time and fun. We head to the clinic next week and will get actual needles for her chemo instead of her central line. If her veins can tolerate the chemo we should be able to get her line out in December. It will be good to see her take a shower and a normal bath again. It will also elevate a lot of stress changing the dressing and worrying about safety and infection.
We are also going to try out a new medication to help Reagen with the effects of the steroids. There are a lot of months between now and June 2007 and that time will seem a lot longer if we are going to basically lose a week each month to the effects of the steroids. The team at DuPont is very sympathetic to our situation and has worked well to help Reagen through this part of her therapy.
On a sad note my Mom – Mom (Reagen’s Mom – Mom Gert) passed away on Saturday morning. We are working through as a family and still consider ourselves lucky and better for having her as a part of our lives for many years.
Milestone… If all goes well on Monday Reagen will officially enter into her maintenance phase of her therapy. She could not have gotten there without your help and the wonderful team of doctors and nurses at DuPont.
Wednesday, November 9, 2005 3:18 PM EST
Reagen’s tough week…
We are expecting a pretty tough week for Reagen based on how things went last month. She is doing really well now considering all she goes through the first few days of this phase. She is really tired and has been pleasant most of the time, but we expect her to be a little irritable over the weekend from the steroids. She should start to come out of it Sunday and Monday and will probably be back to normal by mid week. Vicki and I have learned that having patients is the key, though it is frustrating when you know it’s the chemicals having an impact on her personality. Overall we don’t have it that bad.
A note for the guestbook
We want to re-thank everyone for leaving Reagen and us notes in the guestbook. It is a source of strength at times and we go back and re-read many of the entries. It is hard to recall the normal day to day life before April 2005. It is sometimes harder to remember everything that has happened since then as well, but this guestbook reminds us how much love and support is out there and we appreciate it. We know that everyone is living with their own day to day challenges and it still astonishes me that you take the time out to keep our family in your thoughts and prayers. Reagen has so many supporters (nurses, doctors, friends, family, friends of friends, and people we don’t even know) we are very blessed.
Thank you.
Monday, November 7, 2005 2:29 PM CST
Going Strong…
Reagen has been doing really well. We had a clinic appointment today for a check-up and some chemo. It was a nice trip with all things considered and Reagen was happy to provide me and Vicki with some entertainment. She was really fun to be around. Her hair is coming back and she is starting to look healthier every day.
Of course the reason we went to clinic was to get ready for another spinal tap tomorrow and more chemo. Along with that, the steroids will start again, so we might have a down week. Our expectations are that we will be more up than down moving forward. We will also start to look at getting Reagen’s central line removed in December and returning to school early in 2006.
We’ll update tomorrow after we get out of the hospital.
Monday, October 24, 2005 8:09 PM CDT
Reagen is working hard…
Things are steady and Reagen is still working hard and doing a great job taking her meds and helping with dressing changes of her central line. She also likes to surprise me by taking her “pink guy” with Vicki and then ask me if she needs to take him. Her hair is slowly coming back too. To the naked eye, it’s not much, but to us it a huge milestone. Reagen had a tough time with the steroids for a couple days and during the anticipated fall festival, but she was able to pull out and really get back to herself. We are heading to Hershey this weekend for a much anticipated Halloween break. She should have a blast and she more than deserves it.
We have started talking about getting her central line out. I don’t think it will happen until December, but it will be a test for Reagen because once it’s out she will need to endure quite a few needles. During our conversations she has been back and forth. She doesn’t want to “miss” Christmas so she was asking about waiting, but I think as she understands that she won’t miss Christmas, she’ll be a little better with it. She will have to get needles once a month at least, and more if her counts would drop or anything funky would happen. We are praying for nothing funky.
We are very hopeful that the worst is behind us, and we try not to even think about the scary possibilities that will always exist for Reagen. That said there are many children just like Reagen and some not nearly as lucky and Vicki and I ask that as we continue our fight you think about them and their families. There are some true heroes that continue to fight a much stronger opponent every day. We are very lucky and continue to appreciate each day we get closer to a full recovery.
We could not have gotten to this point without out your continued help.
Wednesday, October 12, 2005 9:59 AM CDT
One tired little Bear…
Reagen did great yesterday at the hospital. She sat and watched her DVD player while a group of nurses and doctors went through paperwork, questions and the occasional poke and prod. She laid down and got strapped in as the medication started to take hold and then got wheeled off with only a whimper for Mommy. She slept for a while coming out of it, probably the longest recovery since April or May, but came out of it in a good mood and ready to go home. She slept most of the way home and took a late nap.
She woke up missing Mom, but recovered pretty well. Vicki had to go in the office yesterday and has been working a good bit at home and Reagen misses her. Dad is just not as soft. Overall Reagen has been in a good mood, but the chemo is taking its toll on her energy. She slept all night last night and a good bit today while she and I were running around to get the truck serviced.
We are hoping her energy rebounds for this weekend and Aunt Lisa’s Fall Festival. Until then it’s fine that she sleeps to let her little body recover. If things stay on track, we should be hospital and clinic free until November. We still have to get blood drawn at home to keep an eye on things, but it should be a good break for all of us.
I should be posting more pictures soon, so keep an eye on the Flickr site this week and next.
Monday, October 10, 2005 8:08 PM CDT
Starting up the next phase…
Reagen had great numbers today. ANC of 1,300 which means she is staying on schedule to start her next phase of chemo. She had her one treatment today and tomorrow she goes in for her spinal tap. We will start oral therapy and steroids tomorrow as well. We are hoping for a non-event at the hospital and minimal effects from the other meds.
Sunday, October 9, 2005 9:15 AM CDT
Rain, rain go away…
No walk this weekend due to the rain. It was canceled on Friday, but just as well since counts were still too low to go and we actually spent most of Friday evening in the hospital. That said, it wasn’t too bad. Reagen had low hemoglobin and needed some red to give her a boost. She had been low the last few days and on Thursday night she had a nosebleed that was a real gusher. It had us pretty nervous for about 30 minutes, but we got it under control and Reags went right back to sleep. There is a certain comfort now when we head to DuPont that makes us all feel better knowing we are being taken care of and that it is nothing unexpected and part of our course for healing. They have been really good to Reagen.
Liz’s team for Reagen raised about $3,000 and it was disappointing the walk was rained out. Thanks again to everyone who participated and donated. I guess this will become a part of our lives now since we have had this experience and hope to prevent it from happening to other families.
We head to DuPont on Monday to see if counts are good enough to start the next phase of Chemo. We could go either way. We would like to get it going, but it wouldn’t be too bad to have an extra week off for Reagen to get strong and enjoy Aunt Lisa’s Halloween / Fall Festival at Hartman Mountain. We have all been looking forward to it, knowing we would be through a pretty tough stretch. We’ll roll with the numbers tomorrow. If she hits ANC of 1,000 then Tuesday she gets a spinal tap, chemo and starts steroids. It just doesn’t end for her. I’ll update when we get some new information.
Tuesday, September 27, 2005 8:08 AM CDT
Reagen is doing well…
Reagen is really doing well. She has a little cold, but has been doing a great job of drinking her orange juice. Her numbers are down as expected. She had to go to the clinic to get a blood transfusion on Friday. It was an all day event, but she was really good about it and was in a great mood. She has to go back to the clinic today to get another transfusion of platelets. They are REALLY low, but we did expect it. Her ANC is also plunging as we expected and she will probably be under 500 by this weekend. We are hoping this cold clears up before her ANC gets too low, but it is a cycle she can’t really control.
The Light the Night walk is taking off. Vicki and I have realized we are very fortunate to have such generous friends and family. Thanks to everyone who has contributed and registered for the walk. The money raised will hopefully avert a situation like ours for another family in the future. The website is:
www.active.com/donate/ltnPhilad/ltnShillingford
We are going to try to get Reagen out for the walk, but that will be count dependent. If she can’t make it Vicki or I will go to represent her on October 8th. Please let us know if you registered so we can meet up at the walk, we don’t have access to all the information submitted.
Reagen should start to build up her numbers right around the 8th, so we are hopeful we can all get out to see everyone.
Wednesday, September 21, 2005 8:20 AM CDT
Going well…
It’s nice to be able to write that things are going well. Reagen had a good visit yesterday and has been in a great mood. Her numbers are starting to dive, but that is expected. She will probably need to have a blood transfusion late this week or early next, but this is typical of this phase of her treatment. Reagen also started her next four days of chemo treatment that will continue at home until this weekend. She has really started to act more like herself and I think she is starting to be a little anxious to get her central line removed and have her hair start growing back. We expect that we still have a few difficult weeks ahead, but should start to make a move out of this phase after this part of treatment.
There is a Light the night walk on Saturday October 8th. A team has been set up for Reagen for the upcoming Light the Night walk. One of Reagen’s former teachers from the Malvern School has been generous enough to set up a team in Reagen’s name. All proceeds will go towards the Leukemia & Lymphoma Society for cancer research. We hope that these types of groups can help eliminate the need for other families to experience this disease. Liz (Reagen’s teacher) has gone to the trouble of setting up a team-website for this walk.
www.active.com/donate/ltnPhilad/ltnShillingford
If you visit the site you can donate or register to walk. Reagen’s team will be participating in the Kerr Park walk on October 8th in Downingtown. We are going to try to attend as a family, but that will be count dependent. If Reagen is unable to attend Vicki or I will go to represent her.
We head back to the clinic on Monday for a check-up.
Thursday, September 15, 2005 6:30 AM EST
Reagen is hanging tough…
We are out of the hospital and happy to be home. The hospital stay was not too bad and we were held up from leaving because Reagen had a couple phone calls to make and had to make an extra lap around on her tricycle to give some hugs to her nurses and wave goodbye. She was quite the character in the hospital and was feeling pretty good considering all the chemo pumping through her. She even spent a little time hanging out at the nurses’ station at 3 AM without Vicki or me.
Reagen enjoyed the ride home and a stop at the toy store for being such a good patient. Of course this disease does not let you off the hook too easily. Reagen woke up a little before 5 AM and got sick. She had it coming out both ends and just felt horrible. We gave her some medicine that has helped so far. It was only the second time she has gotten sick, so we are pretty lucky I guess, but I really think she’s been through more than enough already. She is sleeping quietly now with Vicki, so as long as we stay on top of it with meds, she should be okay.
The hospital was really busy. There were a lot of new cases of Leukemia and it makes it tough to celebrate getting through this difficult period. This thing never stops, and as Reagen starts to recover, please don’t forget all the other kids who are just starting their fight. Also in our thoughts are the nurses and doctors that take care of Reagen and the other kids. They jump on this roller coaster every day with enthusiasm and I don’t know how they do it.
We are looking forward to another quiet weekend at home as we prepare to finish this stage of Reagen’s therapy over the next 4 weeks. She has another two days of chemo treatments this week, but fortunately they can be done at home. A nurse will come by to give Reagen medicine for nausea and then give her the actual chemotherapy. This will happen Thursday and Friday and then Reagen will get a break until Tuesday when we head back to DuPont to start all over again.
No news is good news until we update the site again.
Monday, September 12, 2005 4:21 PM CDT
Ready for the big push…
Great appointment at the clinic today! Reagen has great numbers (ANC up to 2,700). She made a terrific jump and is feeling great.
We are set for surgery tomorrow at 7:00 AM. Reagen will start off with a spinal tap to check her spinal fluid and to treat it with chemotherapy. We will head up to the clinic after recovery to get a 2nd chemo treatment and then we will check into a room over on Reagen’s normal floor. We expect a 24 hour stay to get fluids and yet a 3rd Chemo treatment, and on Wednesday we get a 4th treatment before we head home Wednesday night. Reagen will get two more treatments the next two days but with nurses coming to the house. Then she gets 3 days off before her next 4 day round. A long weekend well deserved.
Thank you everyone for your positive thoughts, prayers and support. We could not do this without your help, we are truly grateful.
Love,
Rob, Vicki and Reagen
We’ll update again after treatment
Friday, September 9, 2005 9:28 AM CDT
We are home…
Numbers are on their way up and Reagen is feeling better. We are still low, but moving steadily in all directions, mood, energy etc. We are planning a quiet weekend home to recover and re-acquaint ourselves with being home. We head back to the clinic on Monday for labs (by the way clinic is the term we use, but it is more like a cancer treatment center). If Reagen’s numbers are good we start treatment on Tuesday which includes anesthesia and a spinal tap as well as chemo treatments and an overnight stay at the hospital that evening. Funny how all this works, numbers going up gets her out just so she can get back in. It should be the start of the last 2 week push during this phase. Wish Reagen luck! She has really fought hard and deserves a break.
Have a great weekend,
Rob, Vicki and Reagen
Tuesday, September 6, 2005 9:54 AM CDT
Still here…
I can’t believe that we are actually still here. Things have in some ways gotten worse instead of better. Reagen’s temperatures have become more aggressive, peaking at over 101 at about 4:30 this morning. Her ANC has been at 0 (yes zero) all weekend and into Monday. The longer she stays at this level the higher the risk of “serious infection”. Her mouth sores have gotten to the point where she can’t eat or drink too much and she is taking morphine every four hours to help the pain. The morphine only lasts about three hours though. She has been in a lot of pain and we still need to give her meds even though it hurts in order to get her fevers down. We really didn’t expect this.
On a good note her belly is feeling much better. She has had some spurts of energy and is pleasant when she is feeling good, but it usually doesn’t last too long. She can’t go to child life or even go on the bike on the floor because she is way too susceptible for infection right now. She is in her solitary confinement though we have been able to sneak out late at night when no one has been around.
We did get the news that her ANC was up to 49 this morning, so that is a move in the right direction, but with the fever, mouth sores and that low of an ANC, we are going to be here for a while. We have had a ton of help from Mi-Mi, Pop and Mom-Mom to keep us in clean clothes, fresh food and a ton of support from them just being here.
It looks like we just have to ride this out. There is no way to sugar coat it, this sucks. Vicki and I can handle the bad sleep, bad coffee, solitary confinement and stress, but it is hard to watch Reagen go through the physical pain that we can do little about. It just seems to be enough already. She has gone through so much and has been a great little patient and done everything asked of her she does not deserve this. As adults we know life isn’t fair, but you shouldn’t have to learn that when you’re four.
We won’t get any new numbers until tomorrow morning. They don’t like to go into her central line any more than they have to because of the high risk of infection. As her numbers come up the mouth sores should start to go away and then she can start to get ready for phase 2 of this round of treatment.
Wish her luck,
Rob, Vicki and Reagen
Friday, September 2, 2005 6:35 PM EST
Back in the Hospital with a fever…
We are back in the hospital. Reagen went to the clinic on Thursday with a very low fever and some belly pains. She had blood work done and x-rays and everything looked to be okay. They sent her home and she was great, but it didn’t last too long. The fever came back and was starting to increase and she just didn’t look good. We had already been told that the threshold for her to come in should be lower due to the treatment stage she was in and because of her history up to this point.
She did not want to go back to the hospital (either did Vicki and I, but there was too much at stake to chance it). She didn’t fight, but cried that she would miss her home and wanted to know if Mi-mi, Pop and Mom-Mom would visit her. She also said that it was like last time she came home and had to go back. We packed up the truck and headed back to Château DuPont.
Reagen’s ANC number was really low, 54. To provide a little perspective, we don’t like to go anyplace if she is under 1,000, and even then we are extremely cautious what and who she has contact with. Her number currently is 27. Reagen has three issues at the moment, her belly and stool inside (which has started to move), her low-grade temp, which seems to be leveling off and her ANC number that is trending down. She could have an infection or something viral, neither of which has been determined. Her other numbers and x-rays (another set they did last night) all look normal. Her spirits have been pretty good when she is feeling good, but she does have belly pain, a few mouth sores and her legs are still hurting from the chemo. All that and she is still getting out some good smiles and laughs.
It looks like we are here for the weekend. It’s only appropriate that we spend Labor day weekend here the same as Memorial day weekend. We can get out if her bone marrow starts to produce and gets her ANC up and her temp down and if she gets a little more regular and stops having cramps. It looks like we’ll be watching Jerry Lewis from here this weekend.
Once again, the staff has come through for us making our stay at the Château as pleasant as could be expected. I hope to update again soon from home.
Have a great weekend,
Rob, Vicki and Reagen
Tuesday, August 30, 2005 8:32 PM EST
Doing Well…
Reagen is hanging in there. She is really taking a lot of meds at home right now. We hare hitting her three times a day with two syringes full of whatever is called for at the moment. Her hair is all gone. If affected us all more than I thought. Her legs are starting to bother her quite a bit too. The one chemo has really done a number on her since she has gotten it the last three weeks. She needs the break. She has her spurts of energy, but has been pretty tired. When she is feeling good she is really happy, but the hair thing and the constant nagging of her parents “are you okay”, is getting to her. We are hoping to have a quiet week and just recover and get ready for part two of this phase.
Reagen’s office is complete so that should give her some good inside stuff to do. I posted about 30 new pictures. Take a look when you get time.
http://www.flickr.com/photos/reagen
Friday, August 26, 2005 5:08 PM EST
Sleeping…
Not too bad of a day overall. Of course I didn’t have two needles stuck into my thigh muscles simultaneously. Reagen may differ on my opinion. The nurse came in an explained what they were going to do and that it would be the LAST time she would have to get leg pinches. She nodded okay and let them put alcohol on her legs. She never moved or tried to fight. She held Mom and Dad’s hand and only cried when they pushed in the Chemo. She is a tough kid, like her Mom. The nurses did a great job and got it done quickly. She rolled over and let Vicki hold her, but stopped crying almost right away and went back to watching her movie and then fell asleep.
She has been sleeping quite a bit, but that seems to be common during this phase. We now have a week until the next Chemo, but that will most likely get pushed back because her counts will probably not be high enough to start due to getting the PEG a little late. We should get another drug free week which will help her body get ready for our hospital stay for her next round of Chemo. Her numbers are good, ANC is still low (so she is still in lock-down), but her pancreas numbers and liver numbers are almost normal.
We are home for a quite weekend. Vicki has been working whenever Reagen sleeps and will be busy all weekend with that, but it seems to be a pretty fair trade. We should be quite for the next week or so. I’ll update some photos later this weekend.
Love,
Rob, Vicki and Reagen
PS – Reagen just woke up and danced her way into my office with Mom. I guess her legs are feeling okay. I am glad that is over with.........
Wednesday, August 24, 2005 2:50 PM EST
Home…
Reagen is plowing through D.I. Her numbers are consistent to where she should be right now. Her pancreas numbers are on their way back down, but her ANC is very low. The Amand family is officially in lock down. Since her pancreas is okay we have to go back to the clinic on Friday for her PEG shot. We are not looking forward to it, but we know we need to get it done in order to get rid of this cancer.
The steroids have also kicked in. Reagen is having a tough time with her emotions. The steroids really do a number on her, but she is better than last time and we only have five more days to go, but who’s counting. We were also told that her second phase of D.I. will probably get pushed back a week due to the late PEG, so that will extend her D.I. for another week, but what’s another week in the grand scheme of things if it’s going to help her in the long run.
We are hoping the steroids ease up a little and Friday is a quick hit. Wish Reagen luck.
I’ll update on Friday after her PEG.
Wednesday, August 17, 2005 8:33 PM EST
Long day, but we are home…
Reagen did a great job today. We had a lot to do and a lot of waiting but Reagen hung tough and was in a great mood. The steroids really have not been a problem since last week and she has been pleasant and in a great spirits. We are fortunate to witness such a strong person first hand.
Today did not come without its challenges though. Her liver numbers are okay again, but her pancreas numbers are going up. This will keep her from getting the PEG for now. It could also land her in the hospital on a no food diet, and only receiving fluids. That would suck to say the least, so we are hoping for a change in this pattern quickly. The elevated pancreas numbers led us to get another CT scan to check it out. What they found was a packed intestine. We are on a mission to get her “going” and so far so good, but it means another med 3 times a day and a lot of trips to the potty. This too could put her in the hospital so we are working with her to make what Reagen calls “good choices” when picking food. She has done pretty good and we are keeping up the unpleasant meds to help her.
Reagen doesn’t have the energy we are used to, but she has it in spurts and did a little showing off for the clinic staff by running around from time to time. I hope she can keep it up because she is so happy when she has her energy. She is pleasant when she is tired too, but you can she is down and it just seems so unfair. She has also not experienced any nausea yet and we are hoping that the trend keeps up.
We hope we are good until next week’s visit on Wednesday. It will be our last for this round, but Reagen’s counts will drop dramatically and she should loose the rest of her hair. Thee good news is we will be almost half way through this DI phase.
All in all we are doing pretty well and considering any alternatives we are doing great. We are a lucky family and thankful for our time together.
Love,
Rob, Vicki and Reagen
Monday, August 15, 2005 11:40 AM CDT
Home sweet Home…
A rough little trip for our girl. We have been 24 hours without any problems and she is drug free (except for the normal stuff). It did not come easy for her though. Up and down with her energy levels yesterday but we got out of the hospital and she stayed awake most of the day. She still did not go poop which is always a concern. About 6 PM or so she didn’t look good but made it to her bathroom and got sick. She looked so weak and we were more concerned with the poop issue because if she can’t go it starts coming up instead of out. We waited it out and I am happy to report that after a 3 hour nap, taking her meds at 10PM and a little more sleep she had her moment and was feeling better.
She has had a pretty good morning so far with up and down energy levels ranging from dancing to just laying listening to music or watching a little TV. Overall we feel good about her current state and just spending some quite time together and really enjoying it.
We should be hospital free until Wednesday when we head back to the clinic to get MORE chemo. We are planning for a pretty quiet week ahead.
Until I update this on Wednesday, no news is good news.
Love,
The Amands
Saturday, August 13, 2005 8:48 AM CDT
In the Hospital…
The kid has had a rough couple of days. Thursday evening Reagen’s steroids kicked it but with a very rough edge. She was pretty much inconsolable except when she slept. We headed to the clinic Friday morning for the PEG, but the way she was acting (sleep, rage, sleep, rage) and the fact that she had no appetite, made the Doctors concerned enough to hold off on the PEG. The real scary part was that they did not know what was causing the behavior. Her numbers were good and even her liver numbers looked okay. It is much easier news to take when you know what the cause is, because you have a plan to fix.
We checked into the hospital around one and were scheduled for an MRI of Reagen’s head for two. That MRI never happened because Reagen could not be sedated and they decided she would have to go under general anesthesia in order to get the MRI done. She did not look good. Everything was either sleep or rage and we did not see any of Reagen’s typical personality traits in between. She finally got the MRI around four and everything came back clean and everyone was relived there was no blood leakage to the brain or anything neurological. We still didn’t know what was up with her behavior though. She came out of the general irritated and was given Valium. It was NO help.
We consulted with a Neurologist and reviewed Reagen’s meds and came up with a possible cross between some of her meds that may have been the cause. It takes a while to get them out of her system, but we have started to see Reagen’s typical personality come back. A little last night and again this morning.
If we continue to see improvement and Reagen can maintain eating and drinking on her own we can head home today or tomorrow. We really have a great team here at “Chateau DuPont” as Vicki calls it. We have had help from everyone. The entire staff at the clinic, four different doctors, nurses, residents and interns, anesthesia, MRI and even the food services staff have all participated to get us through this. No one made us wait for answers to questions we had and most of all they treat Reagen like their own and I mean everyone. It is very nice to see someone care for your daughter the same way you would. Vicki, Reagen and I have been very lucky to work with this team.
The only bad thing we have in our way now is the PEG, but after this scare it doesn’t seem as that big of a deal. We just want to get it done and get home. As nice as “Chateau DuPont” is we would much rather be at Reagen’s Ranch.
Thursday, August 11, 2005 6:33 PM CDT
T I R E D…
That in a word sums up Reagen at the moment. She has energy for about 20 minutes at the most and then she is down for the count. She just doesn’t have it in her. When she is up, she has actually been very pleasant, but it doesn’t last too long and then she hits the wall. She has not actually gotten sick yet, but she has been complaining her belly hurts. We spoke to the Dr. today just to touch base and make sure all the sleeping was normal, but there was not a real concern and we will be in tomorrow anyway to get checked out and get the PEG.
We also spoke to the Dr. yesterday about her ultrasound and it looked like Regen’s liver and spleen were both enlarged. Not bad news, “just news” we were told. We will be very interested to see Reagen’s liver numbers tomorrow to see which way they are trending. We hope down.
The steroids are starting to kick in. It is a stronger dose than she has had before and a little harder on her. I feel so bad for her, especially now that we understand the difference between Reagen on and off the juice. It must be a horrible feeling to go through the change in attitude at any age, let alone someone who is four and really doesn’t understand why any of this is happening. We know life isn’t fair, but for most of us we didn’t have to learn it when we were four years old. Vicki and I are very aware of the effects of the steroids so a mountain of patience and a very long leash are in order for Reagen. We know she’ll be back and we are old enough to weather the storm, but we do expect some rough sailing the next few weeks.
Reagen has been pretty clingy to Vicki the past few days. We (Reagen and I) are both glad to have her home with us. We both lean on her quite a bit. Her office has once again come through for her and we all owe them our gratitude.
Thanks for keeping up and keeping us in your thoughts. Tomorrow is going to be a tough one, but we’ll be okay.
Love,
Rob, Vicki and Reagen
Tuesday, August 9, 2005 6:26 PM CDT
One Tough Kid…
We are home and Reagen is sleeping. She has slept most of the day since her procedure this morning. We were a little concerned, but she wakes up and is pretty much herself. We spoke to one of her nurses just to check, but everything seems normal. Her stomach is really bothering her and we are trying to get more anti-nausea medication in her. Things actually went pretty smooth and Reagen was really good. We had her up and in the truck at 6AM and she never complained about anything. She wasn’t allowed to eat or drink but she never made a peep and we had a nice ride down. The procedure went well and she did well with the anesthesia. We went upstairs to the clinic for two more chemo treatments and she slept right through the second one. We stopped on the way home for a sprinkle doughnut and a slurpee and then she fell back asleep pretty close to home. She has been so good, but it breaks our hearts to see her so wiped out. I can’t wait until this is over.
We had a chance to speak with her Dr. today and asked about the liver and some other concerns we had. He gave us good feedback and re-assured us that we were on track and he was just being over cautious because of Reagen’s earlier problems with her liver. He has no worries of relapse and feels like we are progressing as expected. Sometimes your mind jumps to some of the worst conclusions when you start to get too much or too little information. Vicki and I talked and decided to ask all the scary questions we were thinking but not saying yesterday at our visit and I’m glad we did.
The recovery nurse mentioned that we will look back on this like it was a bad dream and I’m confident he is right, but since we can’t wake up early Reagen is living in it. It feels a little helpless at the moment. Reagen has made it easier for us and she has really worked hard to get better and we are fortunate to have such a strong little girl.
We are headed back to the hospital tomorrow for an ultrasound and then again on Friday for the dreaded PEG.
We are well and thankful to have been blessed with such a great daughter.
Monday, August 8, 2005 6:07 PM CDT
Back to the grind…
I don’t know how to describe our feelings right now. It’s a constant sick in the stomach feeling that won’t go away. When you look at things logically there is no real reason to feel this way. We are coming off a spectacular week and one where we really felt “normal” thanks to good health, good family and good friends. Reagen had good numbers today with the exception of her liver numbers being a little high and her actual liver being enlarged more than last visit. The Dr. said it is nothing to worry about, but we both are. They are planning on starting DI tomorrow and are going to do an ultrasound on Wednesday to check on Reagen’s liver just to make sure everything is working okay. Friday is the day she will get the PEG. It looks like 4 out of 5 days at the clinic this week. If her liver checks out okay that’s fine with me, it’s almost one week down with seven to go. We can’t wish this time away too fast for all of us. I don’t know if we know too much or too little about this cancer to make us feel better or worse. We are trying to keep Reagen informed of what will be happening, but not too much ahead of time. Vicki and I will bear that burden she has to do all the actual work so we see no need to have her think too much about what is going to happen this next eight weeks.
Reagen will go without food after 11 tonight and we will be at the hospital at 7 AM for a 9 AM spinal tap and chemo treatment. After she recovers we head to the clinic for two different chemo treatments, both through her central line. We also start steroids again tomorrow and the dosage will be increased for the next seven days. It’s going to be a shitty day for her.
I’ll try an update the site tomorrow afternoon when we get home.
Tuesday, August 2, 2005 12:50 AM CDT
Getting prepped…
We are enjoying a week of freedom and feeling good. That will all start to end on Monday and continue through much of next week and the 6 to 8 weeks that follow. Reagen is about to start Delayed Intensification which will test her body and spirit during this period. We are confident that she will meet this challenge and we are preparing to be there the entire way to give her whatever support she needs.
Some of the things she can expect are low counts, hospital stays, feeling tired, complete hair loss, needles in her thighs (just once, but that is enough) and her urine tuning reddish pink. There are others, but too many to list. I really feel like we can turn the corner here and we are looking forward to our future together. We know what to expect and realize that after this period we have a long two years ahead of us, but we also know that the worst should be over.
She is sooooo happy right now. She is acting like a normal four year old. In a way I’m looking forward to taking things for granted again, but it will never be the same. Reagen has had a big chunk of her childhood stolen from her and there is nothing we can do to get it back, but I know her future is bright. This family will gain an immense amount of strength from this experience and from being able to lean on all the people that have supported us.
Thank you for all your support and love,
Rob, Vicki and Reagen
PS – As we get into this next phase I will keep the site updated on a more regular basis to help track Reagen’s progress
Monday, July 18, 2005 1:06 PM CDT
Reagen’s Birthday…
In a word, Great. We were very fortunate to have such a awesome 4th birthday. Reagen had good numbers and great spirits. She felt good and got as much as she could out of her special day / week of festivities. The house is still decorated with streamers and balloons and we have not yet been able to talk her into letting us take them down.
Vicki and I had a discussion of how very lucky we are as a family. Most of all we are lucky to have such a great support group of friends and family to see us through this stage of our lives. Reagen has been treated so well from the closest of cousins to the friends of friends, we are in awe of people’s caring and generosity. We understand that she is our focus, but she has also been the focus of so many other people who have their own families, challenges and lives to live. Vicki and I both recognize that people have other things going on and that adds to our gratitude. To have her in your thoughts, prayers and actions is a testament of how giving people can be. She is truly loved and I’m sure that is helping her get through this.
We are currently enjoying Reagen’s good health. Not much talk of what is to come, it will be here soon enough. Thank you for everything.
Love,
Rob Vicki and Reagen
PS Pictures at http://www.flickr.com/photos/reagen/
Sunday, July 10, 2005 10:57 EST
Current Situation
Reagen had a good clinic visit on Friday. She had good numbers and did pretty well with the sedation, but she did have a little trouble coming out of it. It makes her confused and scared, but she doesn’t seem to experience much pain. They take spinal fluid out with a needle to test and then they inject chemo into the same area to protect her central nervous system. It is very hard to watch as a parent, but she comes right back to help us. She has already had to have a number of these and will have to continue through her entire treatment for the next 2 years. The spinal treatments will be less frequent as she moves into maintenance (once every 3 months). The chemo makes her pretty tired right now and she has been napping a lot. We hope she bounces back for her birthday this week. She should have a pretty good break this month as we prepare for Delayed Intensification early in August. We do not have to go back to the clinic until next month when she starts the most difficult two months of her treatment.
Currently we are back on the steroids until Wednesday and preparing for Reagen’s 4th birthday on the 13th. She is excited and so are we to try and make it special while she’s feeling good. I can’t believe she is four already.
Thank you isn’t enough to express all the cards and gifts Reagen gets each week. She loves to see the mailman. We really appreciate the generosity of our friends and family. Each card, phone call, e-mail means so much to all of us at this time, thank you.
We expect a quiet month, but will continue to update as we get closer to August. We are also adding a link to view more photos. It doesn’t have a particular order at the moment, but it has a mix of Reagen before and throughout her treatment.
http://www.flickr.com/photos/reagen/
Love,
Rob, Vicki & Reagen
Monday, June 27, 2005 7:39 PM CDT
What a great weekend and a great day! This has probably been the best week we've had in a long time. Reagen is feeling good, her counts have been good and she is taking her meds like a CHAMP! She is actually saying "Mmmmm" after a few of them! She is laughing and playing more than she has in a long time.
We had a clinic appointment with Reagen's doctor today, which was nothing more than labs, a check up, and of course a list of questions from Rob and I. The appointment went great and all of her numbers look good. The only one we could complain about would be her platelets which are getting kind of low. That makes bloody noses, which are still frequent, all the more nerve-racking. Reagen's next appointment is Friday, July 8th for a spinal with chemo, and chemo through her line. July 8th is also the start of another 5 days of steroids. She will take them for 5 days, until July 12, the day before her 4th birthday. We have had a nice break from having to fast for any procedures, especially during the last stay in the hospital, so we are praying that Reagen does ok with fasting for her spinal. We are also planning to stick with the conscious sedation in the clinic versus general anesthesia in the OR. We feel that the problems Reagen was having with sedation a month ago were due to her liver. Let's hope we are correct!
I think Rob and I have realized that we need to take advantage of any opportunity to have fun and do things that we may not get a chance to do too much over the next few months (or years) and we have also worked hard to realize what is really important and not to get upset about things that aren't. Reagen's health and happiness (there is a strong correlation to our health and happiness here!) are the most important. This made the flat tire on our car and the broken water pipe in our entertainment room pretty uneventful last week. (But enough already!) It also made an invitation from our friends (Thank you again!) to the Phillies/Red Sox game on Sunday something we couldn't pass up. Reagen is in love with the "Green Guy" aka Philly Fanatic, and the seats were in a box with AC, so watching the game was awesome. We are extremely grateful for the invitation and were happy Reagen was feeling good and we were able to go.
There are so many things that I would like to write about and tell everyone. How Reagen sings and dances, how we went out for dinner Saturday night with my parents, our first since Reagen got sick, and after Reagen ordered two dinners, she decided right after they came that she was ready to go and she would eat at home. How she is sad because her favorite horse down the street – Hank - moved home. How she painted her hands and feet the other day different colors and stamped them on paper. How she helped me make eggs and “Boots Monkey Bread” this weekend. How she made me carry her what seemed like a mile for a half an hour looking for ice cream at the Phillies game, and after I finally found it she told me she didn’t want it anymore. How she laughs and smiles. Especially when she is with her Mimi or her Mom-Mom. If you are a parent, these things probably seem so normal for a soon to be four year old. But to us, they are the most beautiful things in the world and should be etched in our minds forever.
I am happy that Reagen feels as good as she does and we are praying that this lasts. We are planning a birthday party and keeping our fingers crossed that Reagen feels well and has good counts. We know we have a few tough months ahead, but we will take every good day there is and take one day at a time.
Thank you to everyone, especially our wonderful families for all of your love and support. Thanks for the cards and gifts for Reagen. She has grown very fond of the mailman! Thank you also to everyone at Body-Borneman as well as to the Boyertown community for your generosity and support for Reagen and Ally Heintz during last week’s sidewalk sale. We wish everyone a very happy and healthy 4th of July.
Love, Vicki, Rob and Reagen.
Monday, June 20, 2005 2:44 PM CDT
Father’s Day…
Reagen and her parents have had 3 great days and counting. On Friday Reagen and Dad played miniature golf and then had lunch with Mom and some of her friends at work. Reagen loves golf and had 2 holes in 1 (legitimate). Friday night was the first time Reagen was really like herself before she started to get sick back in March. Saturday we went to a picnic with other kids from the hospital and had a great time. Reagen rode a pony (Chocolate Chip) and played with some new friends. She was all smiles and having fun. We ended up back at Mom-Mom’s house for an afternoon on the deck. Since Reagen’s numbers are good we decided not to take any breaks unless she requests one. We have learned to take advantage of when she is feeling good and safe and not to put having any fun off to the next day. Sunday we met some of Reagen’s friends at a park and played at home. Her feeling good really brings back memories of how things were before the Leukemia took over. It was the best Father’s day present ever.
Today we have already played miniature golf and we are taking medicine without a fight. We are enjoying our time together and happy to be home and feeling good. We should have this type of continued condition through her Birthday (July 13th), before we head into the next phase of her treatment which should start around the beginning of August and last until the beginning of October. Until then, fun is in the game plan and enjoying our good numbers and mood is the priority. Next check-up is the 27th.
Thank you for all of your thoughts and prayers,
Rob, Vicki and Reagen
PS – New Pictures posted
Thursday, June 9, 2005 8:12 PM CDT
Test Results…
We heard today that the Prometheus test results came back positive and Reagen does have a condition called TPMT (Thipurine methyltransferase enzyme polymorphisms). Reagen is in a select group of children that has this enzyme deficiency. This actually comes as good news so we can adjust her chemotherapy regiment to continue treatment that will be less toxic to her body. We are still shocked that Reagen fell into this rare category but we are relived to know that there is an answer to her recent downturn and a strategy for her continued treatment.
Vicki mentioned that we can’t win the lottery but Reagen could not only get Leukemia but have this uncommon condition as well. For the record, I did buy a Powerball ticket today.
Reagen mood has been up and down, but her numbers continue to improve. She may have a bit of cabin fever and may be getting a little tired of Mom and Dad as her standard playmates. We are hoping to get the numbers good enough so she can have some little visitors. Unfortunately, we have no control over these numbers. It is frustrating to say the least.
Yesterday Reagen got a present at the hospital. She got a hat signed by Lance Armstrong. He was in the requested company of Bono from U2 and Tiger Woods, but he is the one who came through. Today Reagen had a pretty good day. We stayed home most of the day while Mom went to work and enjoyed a fun day with a long nap. Of course we had to have a little bloody nose and a stuck tubie tonight; we have not recently enjoyed a flawless day.
We are working hard to keep things positive and using the help we are getting from friends and family. Thank you. The little things really do mean so much to us.
We are looking forward to the end of the year to be through the most difficult part of Reagen’s treatment, but we try to focus on the day to day to get us there. Reagen has grown up so fast, but this period of her life seems to drag on like a bad dream.
Clinic and check up tomorrow. We will fix the Tubie and hopefully get good numbers and move into the next phase of Reagen’s treatment plan.
Tuesday, June 7, 2005 7:36 AM CDT
We are home…
Currently we are home and happy. It has not been the easiest transition, but it is good to be here. Reagen has been getting better each day but has had a couple of little complications to go along with our return home. Her central line has given us some trouble twice, but Vicki worked with it and Reagen to get thing flowing to save a trip to the hospital to get it unclogged. We had a couple of very minor bloody noses too, but Reagen has taken everything in stride and has helped us move on.
After the VOD like symptoms and problems with Reagen’s liver last week, Vicki and I both feel a little more on edge than before. We just can’t let out guard down and that makes us both feel tense and taints out homecoming a bit. We have a nurse heading to our house today to do some blood work and we hope to see Reagen’s numbers continuing to improve. We are also anxious to get the blood test from Mayo’s lab back to confirm Reagen’s condition and move forward with her treatment.
We head back to the hospital on Friday for a “check up” only and we should start Reagen’s next phase of treatment. That treatment will have to be altered a bit depending on how her test comes back, but it should keep her on track to recovery.
We will try to re-start our “normal” routine today and tomorrow, so please wish us luck.
Love,
Rob, Vicki & Reagen
PS – if some of my information is not clear, and you have a question please ask. You can drop me a note to rob@cata-lyst.com . I try to keep it simple, but I may not be explaining things as well as I could.
Friday, June 3, 2005 9:44 AM CDT
From Thursday, June 02, 2005, around 11 pm:
We are still writing this from the hospital, but we have some good signs and are hoping that we are on to something as far as a diagnosis. We are cautiously optimistic (“cautiously” now being the standard) that we will get to go home tomorrow, but don’t tell Reagen yet.
I know we have worried a lot of people, and believe me, there were lots of people here (including some doctors) who were very worried. Although we don’t have an official diagnosis, there are very good signs that Reagen won this latest battle. First, she is temperature free now for more than 3 days, her liver has reduced in size and the blood flow is in the right direction, and she has lost some weight. She is also eating and drinking, although her appetite is still not back fully. Almost as important, she is laughing, dancing, and racing around the entire third floor of the hospital on a tricycle! With or without her IV pole, “truckie”. She also has her wonderful sense of humor back. Over the past few days she has had some outbursts, to put it extremely mildly, but so far today she has been wonderful with no behavioral problems.
Her white blood cell counts were up the past few days and she was able to go to DuPont’s Child Life room – an amazing room with arts and crafts, toys, games, etc. She was never allowed to go there before due to her counts, so when we went there for the first time on Tuesday, she looked at me like, “You never told me about this place!” She had a field day, but tired out a little bit and didn’t stay long. Of course, like some kind of cruel joke, today she felt great and was very anxious to go to Child Life, but her counts have now fallen to the 500 level. I wanted to cry for her, but we did sneak there for a few minutes (with Reagen wearing a mask) to do some art and then brought some new games back to our room.
When Reagen saw the Child Life play room the other day, complete with all of the baby doll furniture, she asked her Mimi to bring her babies – four of them - to the hospital. She has had someone (usually never her!) pulling them around in a wagon while she rides her bike or gets pulled in another wagon! Then, she lines them all up, gives them all “tubies”, flushes them, and applies a dressing. She is getting pretty good with her sterile procedure. She has obviously observed a lot from the doctors and nurses and hasn’t missed much.
Tonight as we were getting ready for bed, Reagen overheard a page for “keys to the med room”. She asked why they had to have keys to the med room, and I answered that some medicines can make you sick if you take the wrong one or if you take too much of it, so they need to lock the medicine cabinet. She answered “I’m not sick. But maybe when I was, it was because I took the wrong med.” If her diagnosis is what we are hoping for, she is not too far from the truth. It looks like Reagen might be one of the one in 300 ALL kids who have an enzyme deficiency that makes a certain chemo drug that she has to take (almost for her entire treatment) toxic to her liver. This is what most likely caused a type of liver disease that is reversible. We are already seeing the reversing of the disease hopefully.
Tomorrow, Reagen is having another spinal with Chemo. This will be her fourth dose of Chemo in as many weeks, and her fifth spinal. With the liver issues she was having, she was also having some problems with the sedation, so we are hoping that tomorrow goes better since her numbers are improving. By the looks of it, she will need platelets and maybe red blood cells before the procedure tomorrow afternoon.
We want to thank everyone for their prayers, web site postings and e-mails over this past week. We also are extremely grateful to the doctors and unbelievable nursing staff here. They are truly a group of amazing professionals. Most of all, Rob and I want to thank our amazing little girl. She is definitely a fighter and is teaching us all a lesson or two through this. Thank you for getting better Reagen! This will be the last time Dad and Mom take anything for granted!
We look forward to getting home soon. We owe Reagen a slumber party!
Update, Friday, June 03, 2005, 10:30 am:
We had a great night. Reagen was up a lot, mainly to eat which is a switch. Instead of getting up in the middle of the night throwing a major tantrum, she was up singing “Love Will Keep Us Together”. Of course, the bad news is that she is on NPO (no food or drink) status until her spinal at 1:30, and she is already very upset about that. Usually we can distract her, but of course, the joke keeps getting worse and her ANC is now at 87 (1000 being our target for visitors). I don’t think it has been this low ever. So as of now, our discharge status is a little uncertain. She is also receiving another transfusion of platelets, but her numbers are much more stable than earlier in the week.
Wednesday, June 1, 2005 10:29 AM CDT
I originally stared this post 2 days ago but it has really been that busy I have not had time to finish and I’m glad to say things don’t look as bad as they did, but we are not home free or home yet. This is hard to start, really for a couple reasons. First of all we don’t know what is wrong with Reagen at the moment and everyone is working hard to help us figure this out. That said it is also difficult to explain all the possibilities. The second reason this is difficult is because we are still a little scared right now (changed from very scared 2 days ago) and emotionally drained (all three of us), but are feeling an upswing. Reagen is up and down both emotionally and physically. She is a fighter and we are fortunate for that, but she can’t do this alone and we are both trying to keep things together and figure out the best way to help her in this situation. We have a lot of support and love, and I am confident that it will see us through this situation.
We have had a lot of support from our medical team all the way through. They have been comforting, honest and fast acting during this crisis. Reagen has seen her primary oncologist, and several specialists as well she endured 2 x-rays, 2 ultrasounds, numerous blood tests, 2 CT scans 11 blood transfusions, 3 bloody noses, a bunch of fevers plus some other stuff I’m forgetting.
We think we are moving towards a diagnosis but have not gotten to a conclusive one yet. We have avoided a liver biopsy for the near term (today) and we are hoping things work themselves out before we have to do anything like that.
If anyone has been trying to get in touch with us, I apologize if we have not had a chance to get back in touch. We have been very busy and have not had a lot of time.
The medical basics… Reagen has had problems mostly with her liver , and that area of her body, but we can not find the cause. We have had to stop her chemotherapy temporarily and that could run into other problems, but we can’t focus on that yet and I’m told that there are breaks built into Reagen’s protocol for adverse events. (this is just such an event). In laymen’s terms I’m told that there is a 50/50 chance that this issue will resolve itself. The other 50% could be something more serious and the medical team wants to stay in front of it, just in case.
We don’t have anything definite to report yet, but hopefully it will be that we can get ready to head home, but that possibility has not even been discussed yet. Reagen is very strong has endured so much, but she continues to fight and we are very thankful for that.
Thanks again everyone for you support and prayers, they are needed and appreciated.
Love,
Rob, Vicki and Reagen
Saturday, May 28, 2005 10:49 PM CDT
Reagen has run into some complications. We are back in at DuPont with fever and a very strange pattern of blood counts. At this point, we don’t expect her to be released before Tuesday at the earliest.
As far as the events of the past two days, here goes...
We came in to the clinic yesterday for a standard spinal with chemo, and another dose of chemo which she has had before. Last week, she had a similar spinal and the test went fine, except for pain and discomfort afterwards, maybe caused by a bump to a nerve. Her counts last week were on the high side, considering her diagnosis and where she has been. So you understand the craziness, her platelets last week were 250k (normal) and her hemoglobin was 11.3 (low, I think, but good). They draw labs before every procedure, and told us that her platelets were 6k and her hemoglobin was 6.3. They repeated the labs and basically got the same results. We have no reason why they dropped so drastically, except that the oral chemo drug she has been on for 2 weeks may cause counts to drop - just not this drastically. So yesterday, she needed transfusions of platelets and red blood cells. The spinal never happened until 4 pm (scheduled for 9 am, but delayed due to the transfusions), and Reagen basically had to go without eating for 18 hours. She responded terribly to the sedation and came out of the test with almost steroidal behavior - screaming, very moody, crying, etc. The ride home was ok, except for insisting that she go into Wawa for a doughnut and a slurpee. Her white counts were too low to be in public, but we gave in, in the end thinking that it was the safer thing to do - she was very upset and would not get into her car seat.
Anyway, we got home at 7 (we left at 7 am) and she was on and off moody, mad, etc. At 8:30 or so, Rob thought she felt warm, and sure enough - temp of 101.5 - automatic admission under DuPont's guidelines. She was very upset about having to come back, but we got back here about 10 last night. Little did we know that the timing of the fever was a good thing. We didn't realize that her platelets basically dropped immediately back down to 9k, even after the transfusion, and she woke to a bloody nose that lasted 45 minutes. Her hemoglobin also was low, although not as low as yesterday, and they gave her platelets and blood again. They also did an ultrasound of her liver, which remains enlarged since her diagnosis, and that proved to be ok. However, in the middle of the test, she got another bloody nose, this time for 30 minutes. So, she received more platelets. That’s 5 transfusions of either blood or platelets in 36 hours.
They have pretty much cultured every fluid and solid that her body produces, and we are waiting to see if anything bacterial turns up. If this proves to be a virus, then we pretty much just have to let it run its course. A virus could be one of the reasons her counts are all over the place. She had another temp tonight, of almost 102. She is sleeping now with Rob, and we are hoping for a quiet night. We are scheduled for more labs through the night, and a belly x-ray first thing in the morning. Also, the doctor has stopped her oral chemo temporarily until her counts are more stable and her fevers stop.
We will try to update our site throughout our stay. While we are here, we need to really limit Reagen’s exposure to company until she is more stable and we know what is going on. Her ANC is hovering around the 500 mark, so she is pretty much isolated here. E-mails, cards and prayers are invaluable to us right now, though.
Rob and I feel like we have been doing everything right, and are struggling a little with why this happened. Reagen has been so strong through this whole thing; every little setback for her just tears my heart out. Everyone says to expect bumps in the road, and that we will get through them, but it certainly doesn’t make it any easier to accept and deal with when they actually come about. And it just seems all the more unfair for her.
Through everything that has happened in the past 2 days, Reagen still has kept her sense of humor and her laugh and smile are contagious, as one of her nurses said. We are blessed to have such a wonderful, beautiful little girl. I know that she will teach us many lessons along the way. And I also know that she will come out of this, shining.
Tomorrow, we plan on painting the windows in our room. I hope that is as exciting as it gets.
Goodnight, and thanks to everyone for your continued prayers and support.
Wednesday, May 25, 2005 11:24 AM CDT
Out of the fog
Reagen is doing well from her treatment on Friday. She had some back pain and leg tingling Friday night and Saturday afternoon, but we were told it may have been because the “touched” a nerve in her spine. She did not have any of these symptoms before, but I’m happy to report they went away rather quickly.
We seem to be coming out of a fog since the beginning of April. I can’t believe it has been 2 months. Our world had basically stopped and we are starting to emerge with a very different perspective than before. It’s hard to explain, but it is just different. I imagine that over the next 2 + years we will be in a constant state of flux.
We continue to appreciate the notes we get and the postings on the guestbook. They are a source of strength when you feel isolated. We certainly recognize that everyone has their own personal challenges and I think we appreciate the thoughts and prayers even more because of that.
Back to the Hospital on Friday for another spinal tap. We will try an update as soon as we get out.
Love,
Rob, Vicki and Reagen
PS – posted some new pictures
Friday, May 20, 2005 1:23 PM CDT
Quick update…
Reagen had a great day at the clinic. Chemo (spinal tap) went well, her numbers are okay and she was very brave while they did their work on her back. A little problem with her central line getting blood, but the nurses worked it out and this particular problem is common for her stage of treatment.
Vicki went back to work this week, so it has been a bit of a change for all of us. Her office has been extremely accommodating with regard to her schedule and that has helped out our family tremendously. We owe them one. Reagen and I had a pretty good time while Vicki was gone but Mi-Mi was a big help along with a day spent with her Aunt Lisa. She is always a crowd pleaser.
We hope this week to get to a little more normal schedule and if you have not heard from me for a while, it may be this week, but please don’t hold me to that. The one thing we have learned is that things change in an instant, and I feel like we are being lulled into a false sense of security. I’ll update the site in the middle of the week if all goes well.
Have a wonderful weekend,
Rob, Vicki and Reagen
Saturday, May 14, 2005 9:13 PM CDT
It has been a few days since we have posted an update, but we have a lot of good things to report. It was a busy week, with three clinic visits. On Monday, Reagen went to the clinic for some lab work in preparation for Tuesday’s bone marrow biopsy and aspiration and her spinal tap. She was put under general anesthesia for those procedures, which meant she had to fast for 10 hours. Fortunately the effects of the steroids wore off fast enough that she had no problem with the fasting – we continue to be amazed at how well she handles all that she is made to endure. We got the great news on Thursday that Reagen is “solidly in remission”! Of course, for us, there was no other option – if she wasn’t in remission at this point, she would need to follow a much more aggressive treatment schedule and her chances of beating this may not be so great.
We were hoping her ANC would be above 1,000 on Tuesday so we could start the 2nd phase of her treatment – “Consolidation”. However, her counts were only 800 so we went back to the clinic Thursday. Her counts then were 1,200 which meant she could start consolidation. She received a dose of chemo through her central line, and we also started a new med. She currently takes 4-5 meds a day that we mix to only give her what seems like three. This is the fewest meds she has had to take by mouth since being diagnosed.
The meds Reagen took in the first month of her treatment made her gain 10 lbs, constipated her, and made her hair fall out. Not to mention the emotional effects of the steroids. The meds in the 2nd month will probably give her diarrhea and will make her lose her appetite. I can’t think of how hard this must be on her little body. But she continues to take each new twist and turn in stride. Since she is off of the steroids, and especially since her belly is feeling a little better, her beautiful personality has returned - she spends a good part of her day (when not at or in transit to the clinic) laughing, doing art projects that she loves, and reading books. We have taken some good walks, and she has some energy for her playground, but her physical strength is not up to where it was just yet. She isn’t complaining of anything hurting, so that is a great sign!
Since Reagen was admitted to the hospital on April 7th, she has not been anywhere in public. She first was able to play with some of her cousins when they visited on Mother’s Day. It was great to see her playing and trying to keep up with her cousin Ryan (7). The kids were wonderful with her and we want to thank them for a great visit. Her first outing was last night to see “the Green Guy” A.K.A. the Philly Fanatic. She lasted until the end of the 8th inning at Citizen’s Bank Park before we could finally convince her that it was time to go home. She had a blast playing with her cousins, listening to all of the music and watching the Green Guy.
This month’s treatments are pretty intense, but we only have to go to the clinic weekly for the next few weeks. Reagen will receive weekly spinal taps with Chemo under “conscious sedation”. These take place in the clinic and not in the surgery suite. We have been assured that they will go well, but our fingers are crossed. Reagen will also receive a make up dose of chemo through her central line.
Monday, May 9, 2005
Moving on
Reagen had a good appointment at the office today, and the best news is we came home after the visit. Her ability to fight off infection is a little lower, but everything else looks good. We go in tomorrow to have another bone marrow aspiration and a chemo treatment to the spine. The bone marrow test should show that she has stopped producing Leukemia cells and the spine chemo is to prevent any cells from entering her central nervous system.
The steroid treatment ended on Saturday and we are looking forward to and end to the side effects associated with it. The new treatments that start this stage are another oral chemotherapy med and spine chemotherapy like the one she is having tomorrow, but she will not be asleep. She will have three of those in four weeks. Ouch!
Her spirits are incredible when she is in a good mood, which is becoming more frequent as the steroidal ranges calm a bit. She is currently out for a walk with Vicki and helped water flowers around the house. It was Vicki’s first time watering flowers too. She has never had so much free time in between tending to Reagen and her older son / husband.
We hope to get some time this week to get back to so many people who have called, written and send cards and gifts. (everyone says they understand we are busy, thank you) We are overwhelmed everyday by peoples’ caring and generosity. Many times people say “we don’t know how you do it”, which is what I would have said before this happened to Reagen. The real answer to that question is we dare able to do it because of you. People who are interested and care have enabled us to see past this challenge and focus on the future for Reagen and us. The day to day goes slow, but a note here and a call there helps to break it up, and we are gaining momentum to beat this and move on.
Thank you again.
Love,
Rob, Vicki and Reagen
PS – I’ve posted new pictures
Sunday, May 8, 2005
Happy Mother’s Day
There is not a card, flower or gift that can show the appreciation for a Mom. This is a feeble attempt to express the appreciation I have, but I know as I start that it will not suffice. I have witnessed first hand the power they posses to heal, comfort, love and lead in crisis situations.
Thank you seems too small to cover all they do yet they would not accept more. I will never know what it feels like for Vicki to experience a daughter going through such anguish. Reagen is a part of her soul and I know she feels each, pinch, prod and pain Reagen endures. She tends lovingly to every whim, cry and need Reagen can muster. She keeps control when everything around her is in chaos and doesn’t let herself breakdown until it is the “right” time.
I could share many stories that exemplify how Vicki keeps this family and this situation moving in direction towards healing on many fronts, but I would pay a price. Those of you who know her from family, friends and co-workers have all witnessed her strength, humor, sacrifice and ability to lead. It has all been intensified in the intimacy of this current situation. Without her we would not be able to see this through. She is our rock.
Thank you and we love you,
Reagen and Rob
I would also like to thank our Mothers. I can not imagine what it is like to watch your own son or daughter stress over the pain of your own grandchild. While in the midst of this situation you not only comfort, but act to make the situation bearable. By doing all the things you have in your own life and tending to the needs of not just one, but three other people in need of your help. A farm of Mother’s Day flowers would not be enough to show our appreciation. Vicki and I both lean on our Moms to provide not just logistical support, but in the really tough times the actual ability to keep going. They truly lead by example. You never once hear of their own challenges that they face on a daily basis. You only hear, what else can I do?
Thank you and we love you,
Rob, Vicki and Reagen
Witnessing the strength and souls of these three women has never made me feel so weak and so strong at the same time. I do not have expectations of achieving their stature, but I know that with their support I can and will overcome the challenges that I face with them by my side.
Have a wonderful Mother’s Day
Friday, May 6, 2005 12:10 EST
UPDATE...
If you read the last post, there would be reason for concern, however, we were pleased to be informed that Reagen’s ANC # was not 100. There was a mistake in the calculation and her # is just over 1,000. Basically, we are being discharged now. Heading home for the weekend! Still not able to see all the people we want yet, but we'll take it. Everything else looks really good and Reagen is even starting to walk again without our assistance. Everyone please have a happy Mother’s Day.
Love,
Rob, Vicki and Reagen
PS - Steroid is done on Saturday!
Friday, May 6, 2005
Another day another twist…
We made it home as planned the other day but starting off we all had a bad feeling. Mom-Mom helped us out to the truck while Reagen was in a very unpleasant mood. She wanted to make a quick stop at the play area (The one that was outside her room for 2 weeks). As we parked next to it to take a little break before our ride home, they locked it up for the night. If she was in a little better health I would have jumped the fence and had Vicki hand her to me (my record is reasonably clean), but we opted for driving home.
That evening the family enjoyed a movie night and slumber party downstairs in front of the TV and actually rested well. Vicki forgot to have the mac and cheese ready at 1 AM. She was told about it too, and will learn for next time. Reagen runs a pretty tight ship with the snack department these days.
We woke up to a big breakfast and then belly pains (Reagen). We talked to the Doctor a few times on the phone and then made the trip back to A.I. Dupont. Reagen was in a lot of pain and could not get comfortable. The Doctors were concerned (as well as Vicki’s sister Lisa, a nurse, who was there to witness it) and they decided to admit Reagen before they even took any films. Everything showed up negative, but they decided to hold off on Reagen’s Chemo treatment until she is feeling better.
If we fast-forward about 4 hours, we have a different kid. Reagen said, “I think we should stay here tonight to make sure my belly is better, then go home”. Dr. Frantz agreed and we settled in for a normal night in the hospital.
9:35 AM Reagen had a great night and we all (enjoyed?) our stay. I spoke to the resident and we feel ready to go home. She informed us that Reagen’s ANC # (determines ability to fight off normal infections etc.) was 100. That number puts her at risk around anyone. Basically she should be in a bubble. Her spirits are great and emotionally she is very happy, so we are still keeping the option of going home in the mix. Vicki and I feel that she will see less people at home and that our house is definitely cleaner than our hospital room with more entertainment options. We are going to wait and see. We have to be back here Monday, Tuesday and Thursday for tests next week, so we may stay, we just don’t know. On Tuesday Reagen will have to go under again to test her bone marrow. She has been so much; I don’t even realize it sometimes until I start to write it down, and I’m leaving some stuff out.
There is so much else to tell everyone and way too many thank you’s to be covered in this note.
Thank you for your continued support.
Love Rob, Vicki and Reagen
Wednesday, May 4, 2005 9:43 AM CDT
Wednesday, May 04, 2005
Keeping on track. So far so good! Reagen is responding well to treatment and again moving in the right direction. We are trying to fast track our way out of here. We’ll see where we are after the Dr. makes rounds, but we have already “communicated our expectations”. We have to pass a couple more tests, but if all goes well we could be home late and that’s better than staying as long as Reagen is not in any risk.
Vicki and I split a room at the Ronald McDonald house and each separately grabbed 4 hours of sleep and a shower. MiMi did an entire shift at bedside and rode out the storm. By the way, next time you are at McDonald’s drop the change in, it is a worthwhile cause.
We are in a wait and see mode for the next Chemotherapy dose. We should find out about that today as well. We have a week window, and it seems that it will not be a problem at this point.
I hope to update this from home.
Thanks for keeping us in your prayers,
Rob, Vicki and Reagen
Tuesday, May 3, 2005 2:36 AM EST
May 3rd 2:36 AM
I was hoping to post a new entry that reported Reagen’s numbers are continuing to stay on track. We also wanted to report that we had a great ten days at home and feel like we are turning the corner on this with everyone’s help. The good news is that they are for the most part and Reagen is staying on the standard protocol for her chemotherapy. The unfortunate news I have to deliver is that we’re writing this from the hospital today. Reagen’s belly is getting big from the continued steroid use and at her visit today, the Doctors thought a little too big along with some other symptoms. We were admitted to help clean out everything in her intestine and make sure that the Chemo she is on is not weakening the muscles she needs to clear herself out. We did miss the treatment today, and it may be delayed by a week or so.
We expect to be here for 2 or 3 days at the most. Reagen was upset when we told her, but she has adjusted well. Vick and I hate the way we have to pump oral meds in her, but we have to. Reagen says “this sucks”. Vicki and I agree.
A quick note…
We want to say thank you to everyone again for writing in the guest-book and for the calls and personal e-mails. We pull a lot of strength from that when we are having a bad hour or day. We truly could not get through this without the support we have received. We are very fortunate.
The big picture, Reagen is getting better and we expect a full recovery. This we are grateful for. The day to day is sometimes a drag, but we expect it will be a distant memory as we all grow old together. Once we get out of the woods, there will be a lot to laugh about and maybe cry a little, but we will be able to do it together.
Tuesday, April 26, 2005
The beginning of our journey.
Reagen was diagnosed with Leukemia (specifically ALL – Acute Lymphocytic Leukemia) the morning of April 8th 2005. We were heartbroken. Reagen had been running a low grade temperature and just did not seem herself. Through the persistence of Vicki and her motherly instinct she had us running back and forth to the Doctor. Dr. Pennington was cautious and persistent and pushed to test Reagen a few times before he broke the news to Vicki on the 7th and sent us to A.I. DuPont in Delaware. Needless to say the experience was (is) a nightmare. Vicki and Reagen were very strong and Reagen was able to provide all of us with the strength we needed to get over the initial shock. We started treatment the next day and Reagen had a “central line” installed on her little body. This line allows her to give and receive blood, get some chemotherapy treatments and will remain with her / us for the next 9 – 12 months. Overall treatment is expected to last about 2 ½ years.
We were all staying at the Hospital until last Friday, April 22nd when we headed home as a family. It is nice to be home. We were back at the Hospital yesterday for a full day of tests, treatment and check ups. We will be visiting the clinic at the Hospital a few times a week for treatments and tests. Reagen has been through so much already in a short period of time, and still manages to smile and laugh to keep us going.
We expect a full recovery. Based on the education on this disease we are expecting a long difficult journey for Reagen, one that Vicki or I would gladly take for her but as that is not possible, we must settle for taking it with her. We will try to keep this site updated as best as possible to keep all of our caring friends and family updated. Thank you again for your love and support.
Rob, Vicki and Reagen.
Status, Tuesday, April 26, 2005:
Reagen has been on steroids now for about 16 days, and has received 3 rounds of chemo through her central line, and one round via simultaneous injections into each of her thighs. She has the appetite of a person on steroids, and has been through the spaghetti-o cravings, only to replace that by the meatball, macaroni and cheese, grilled cheese and pizza cravings. Keeping up with her appetite is exhausting. She has temporarily lost her sweet tooth. Her appearance has also changed due to the steroids. We are counting the days until day 28 when she no longer has to take them (except for intermittent 5-day periods throughout her treatment) and are anxiously awaiting the reversal of the emotional and physical steroidal effects. Of course, by then, we expect her to lose most of her hair. Her hair has already started to fall out and we are hoping to convince her to have it cut soon. That will be pretty tough for her since she has only had her hair cut once in almost 4 years, I am sure she will handle that better than we will, as has been the course so far.
Physically, Reagen is adapting to her “tubies” as we call her central line. She is very protective of them and still tentative about her dressing. She likes to help us flush them each day. Friends gave Reagen a new doll when she was in the hospital, and we gave the doll “tubies” that Reagen flushes and cares for. It is amazing!
She has a good amount of joint pain and muscle weakness and gets around pretty slowly – her challenges are getting up and down and stairs, but she is really doing a great job of being independent. Today was a great day at home – nothing but the regular meds to take (she takes 5-6 a day by mouth currently, which is a struggle). The weather was great and she actually got dressed and was outside a good bit. She had fun with her Mom-Mom and Mimi, and this evening we saw her normal personality shining through. We will close the day by worrying about her of course, and praying for a tomorrow as good as today.
Tuesday, April 26, 2005 6:32 PM CDT
The beginning of our journey.
Reagen was diagnosed with Leukemia (specifically ALL – Acute Lymphocytic Leukemia) the morning of April 8th 2005. We were heartbroken. Reagen had been running a low grade temperature and just did not seem herself. Through the persistence of Vicki and her motherly instinct she had us running back and forth to the Doctor. Dr. Pennington was cautious and persistent and pushed to test Reagen a few times before he broke the news to Vicki on the 7th and sent us to A.I. DuPont in Delaware. Needless to say the experience was (is) a nightmare. Vicki and Reagen were very strong and Reagen was able to provide all of us with the strength we needed to get over the initial shock. We started treatment the next day and Reagen had a “central line” installed on her little body. This line allows her to give and receive blood, get some chemotherapy treatments and will remain with her / us for the next 9 – 12 months. Overall treatment is expected to last about 2 ½ years.
We were all staying at the Hospital until last Friday, April 22nd when we headed home as a family. It is nice to be home. We were back at the Hospital yesterday for a full day of tests, treatment and check ups. We will be visiting the clinic at the Hospital a few times a week for treatments and tests. Reagen has been through so much already in a short period of time, and still manages to smile and laugh to keep us going.
We expect a full recovery. Based on the education on this disease we are expecting a long difficult journey for Reagen, one that Vicki or I would gladly take for her but as that is not possible, we must settle for taking it with her. We will try to keep this site updated as best as possible to keep all of our caring friends and family updated. Thank you again for your love and support.
Rob, Vicki and Reagen.
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----End of History----
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