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Wednesday, August 10, 2011 3:10 PM CDT
Greetings, and thanks for checking on Erin! We completed her series of annual check-up appointments at Cincinnati Children's Hospital a couple of weeks ago. It takes a while to get all the results back, but I'm happy to report that everything looks good. I never get tired of seeing all of her CBC results well within the normal range. For a very long time -- her platelets ran in the 15,000-22,000 range (if you can imagine that! Normal is 150,000-400,000!!).
Anyway, it's always good to see our friends at Children's again, and we just can't help but feel blessed when we see how robust her health is. They estimate Erin will be 5'8" tall when she is finished growing. She was delighted to hear that! With Kevin being 6'6", and me topping out at 5'11" -- 5'8" is probably still on the short side for the McKee family. Katie's height was recently checked, and they said she was 6'0" (she was not thrilled by that!). Anyway, Erin's doing great and she's getting ready to start High School. Another blessing that I almost could not have imagine 5+ years ago. I suspect every Fanconi parent has, at some point, feared what the future would hold for their child. When Erin was diagnosed back in 2003, I truly wondered if she would survive to see high school. I am so grateful for the success of her transplant. We know that the future will not be without it's challenges for Erin -- but we are very, very encouraged by the remarkable strides that are being made in the treatment of this disease. I just read an article on the internet that describes a new leukemia treatment where they have altered HIV cells (removed the HIV virus and inserted cancer destroying stuff) and injected them into advanced stage leukemia patients -- and those new cells attacked and destroyed the leukemia cells!! The treatment was originally considered so radical that they had a hard time getting funding for the test -- but the results have been absolutely incredible. If it can work with leukemia cells -- why not other types of cells? We could very well be on the verge of an amazing breakthrough in the treatment of some pretty horrible children's diseases. I live for the day when these miserable diseases are wiped off the face of the earth. We have some pretty incredible doctors working hard to make it happen. I hope and pray that I live long enough to see it all come to fruition.
Katie starts college in September. We completed orientation last week, and honestly, the excitement of a college freshman is contageous! Just being on campus is exciting. She is ready!!
Jess and Brett are busy planning Kenzie's 1st birthday party. It's hard to believe she's about to turn a year old! She is so incredibly adorable. She also has the most adorable personality of any baby I've ever met. Seriously! And, I'm not biased at all. I'm being completely honest -- the kid is adorable AND brilliant. What more could a grandma ask for?? Ha! We're really looking forward to the party. It feels like she's been a part of our family forever. We adore her. Enough said!
That's about it from this end. Erin does have one follow-up appointment for later this month, but otherwise it looks like we're done for the year. Her braces came off earlier this summer, and that worked out GREAT. All her jaw issues resolved after the braces came off. Miraculous! And her smile is simply spectacular.
It's been toasty in Ohio this summer. It sounds like it's been toasty just about everywhere. After the miserable winter, and the wet, cold spring we had earlier this year ... I PROMISED I was not going to complain about our summer weather. So, I'd best close here... (Ha!) Actually, we've finally gotten a little break, and the upcoming week is going to feel more like Fall. My favorite season!
Hope everyone is enjoying what remains of their summer. We remain thankful for every blessing, and appreciate every prayer.
Until next time...
- Barb, Kevin, Katie, Erin, Jess, Brett & Kenzie
Friday, June 10, 2011 12:19 AM CDT
Well, apparently the new background worked! Our weather has improved DRAMATICALLY in the last couple of weeks. Gone is the chilly, gloomy rainy weather, and in its place has come some pretty steamy, summer-like weather. We'll take it! Typically, the extreme heat and humidity frazzles me -- but lately, not so much. I think we're all just grateful that the gloomy weather has moved out.
We have not made our annual pilgrimage to Cincinnati Children's Hospital -- but I did want to report that Erin's braces were removed earlier this week. To say that she was thrilled to have them off would be an understatement. And ... best of all, when her braces were removed, her jaw function improved dramatically!! Woo Hoo! We had consulted with a TMJ specialist, two oral surgeons, a dentist, and Erin has been in physical therapy for months -- for a problem that appears to have been tied completely to her braces! Once they came off, her jaw function improved. I don't know who was more thrilled -- Erin, or her dad and I. But one thing is for sure ... her smile is absolutely beautiful!! It's also worth saying that we are thankful beyond measure that we did not opt to pursue the surgery that the first oral surgeon recommended to repair Erin's jaw. What a disaster THAT would have been...
Summer is shaping up to be busy, crazy, and lots of fun for the girls. We're heading to Gatlinburg with friends soon, we've got a week long mission trip planned, and Erin is going to be watching Kenzie two half-days each week, which she is really looking forward to. Katie's college orientation will take place at the beginning of August. I'm hoping to go and visit the college before then so she can walk around and get a good "feel" for the place. It will be here before you know it!
Graduation was great. Katie's graduation open house was well attended, and very nice. Overall, life is just great!
I think that's it for now. I'll update more after Erin's appointments at Childen's in a couple of weeks. We just had to share the great news about her braces/jaw problem. We are blessed!
Until next time...
- Barb, Kevin, Katie, Erin, Jess, Brett and Kenzie!!
Wednesday, May 18, 2011 12:34 AM CDT
Greetings from the polar north! (Ha!) We're actually not THAT far north -- but lately, it sure feels like it. I think perhaps I jinxed us, weather-wise, by leaving the snowman background up on this webpage for so long. So, today I've changed it to something a bit more seasonal, and now I'm crossing my fingers that the cold, gloomy, wet weather we've been having in Ohio will begin to move out... FINALLY. Our high temperatures are running about 20 degrees below normal for this time of year. We broke a temperature record here the day before yesterday (high for the day only reached 51 degrees, and June is only two weeks away!!) I'm blaming my sour disposition on the weather. Kevin thinks it's just my age... (HA!)
Things on the health front continue to look very good for Erin. We are scheduled to go back to Cincinnati Children's Hospital next month for her annual check up. We will actually be going to Children's on three different days to accomplish all of our appointments. Good thing we live fairly close to the hospital! Dr. Harris is semi-retired, and he's only in Ohio one week a month. That is always our starting point when we're scheduling appointments. However, it's getting harder and harder to coordinate all the other doctors around Dr. Harris' schedule. Anyway, we always get it worked out in the end. I'm praying for another year of very good results.
Erin's jaw situation hasn't improved much. We've seen three specialists, a dentist, an orthodontist, and she's been going to physical therapy twice a week for months now. So far, nothing has resulted in any significant improvement, and honestly, even the specialists aren't in agreement as to what the problem actually is, nor how to treat it. Two of the specialists (a TMJ specialist and an oral surgeon) believe the disc in her jaw is dislocated, and the other believes it's a muscle issue due to years of clenching and grinding her teeth. We saw a new dentist for the first time last week, and he suggested that two of the brackets on her upper arch in the very back need to be removed ASAP. They are poking and causing so much irritation in her mouth, very near the jaw area, that he suspects they may be contributing to the problem. Her orthodontics have been done since early this year -- but we have not been able to do the necessary impressions to make her retainers because she is unable to open her mouth wide enough to accommodate the impression trays. So, her braces can come off at any time -- but we can't maintain the end result without retainers. We've decided to go ahead and have her braces removed. At this point, there is no end in sight regarding her jaw issue, and her braces cannot stay on indefinitely. Her orthodontist agreed to remove them and put a bonded retainer on both her upper and lower arch (a little unorthodox, but under the circumstances, it's our best and only option!). Once the braces are gone, we'll be able to test the dentist's theory that perhaps those brackets are the culprit. Anyway, for months now we've been chasing our tails regarding this problem. Now, at least, we've got a plan, and Erin is THRILLED to know her braces will finally be coming off.
So, that's the latest regarding Erin. Overall -- she's doing great!
Katie has two days of high school left. I just can't believe that she's about to close the book on high school and embark on college life. One minute, I'm so excited and happy for her that I can barely stand it -- and the next moment, I'm on the verge of tears with a huge lump in my throat. (I hope that's normal when you're the mom.) Anyway, lots going on in our neck of the woods.
Jess and Brett are busy planning their wedding. Kenzie is absolutely the happiest, most kissable, adorable baby ever. Suffice it to say that our whole family is "baby crazy" right now. We all got together to celebrate Erin's 6-year bone marrow transplant anniversary on May 11th. We met Brett, Jess and Kenzie at a popular ribs restaurant in downtown Cincinnati. I think Kenzie was the star of the show -- but I don't think Erin minded one bit. She is over-the-moon crazy about that baby. We all are!
So that's the latest from our home. Overall, I'd say we're doing pretty darn good. I'll try to update again after Erin's braces come off, and after we make our annual trek to Cincinnati Children's Hospital.
Hope all is well! Until next time...
- Barb, Kevin, Katie, Erin, Jess, Brett & Kenzie
Friday, January 28, 2011 1:55 PM CST
Greetings, and thanks for checking on Erin! Things continue to go well in our little corner of the world. I can't believe it's been so long since I've updated the website. Shame on me! Having said that, no news is good news.
The holidays were great. We've been dealing with snow just about continuously since well before Christmas. What we considered "charming" at Christmas is now more of a bone-chilling nuisance, but I'm confident it will make us all the more appreciative when spring finally arrives!!
Erin's had a health "snafu" that actually has nothing whatsoever to do with her Fanconi Anemia. After a routine orthodontic visit back in November, she complained of pain and some restriction in her ability to open her jaw very wide. I called the orthodontist's office and I was told that the brackets they added (to the top back molars on either side) typically DID cause discomfort, and that it probably wasn't that Erin "couldn't" open her mouth very wide, but rather it was uncomfortable and she didn't "want" to open her mouth very wide. After about 24 hours, Erin stopped complaining and said it wasn't hurting her anymore, so we let it ride until her appointment in early January (why, I can't really say. So much for my "Mother of the Year" award! I'm an idiot...) Once the orthodontist got a good look at her, he referred us immediately to a physical therapist with a specialty in TMJ problems. To make a long story short, because the condition (a dislocated jaw) persisted for two months before we attempted to treat it, it was considered "chronic" -- and standard forms of Physical Therapy will no longer work. We were referred to a TMJ doctor who wanted to do an immediate MRI to confirm his diagnosis -- but her braces needed to be removed prior to doing the MRI. The orthodontist said he is not ABLE to remove her braces because she can't open her mouth wide enough right now to accommodate the tools he needs to do the job. He also said he would be very reluctant to attempt anything right now for fear of making the situation worse, or hurting Erin. Talk about being between a rock and a hard place!! In addition to that, I'm very, very sensitive to exposing Erin to any type of scan or x-ray because of her high predisposition to head and neck cancers. Sooooo, ... I've been in almost constant contact with Robin Mueller at Children's Hospital as we've attempted to navigate these treacherous waters to make sure that whatever we do -- it will not be detrimental to Erin's overall health and future. It was finally determined that the MRI could take place with her braces on (Yea!), but once the MRI provider found out she had a PDA coil placed to correct a minor heart murmur back in 2004, they refused to do the MRI. (Their "on-line" research of PDA coils indicated that it would be dangerous to Erin). I had already spoken at length to Robin about this, and she consulted with the radiology specialists in the Cardiology Department at Cincinnati Children's Hospital, who told her that there was absolutely no problem whatsoever with Erin having the MRI with that coil in place. So, that's where it stands. One set of professionals is telling me that it's totally safe, and another group of [professionals?] telling me that it would not be. I'm sure the TMJ doctor is going to be very perplexed. The good news is that Erin is not in pain, and she's really not complaining much about this. I think her biggest concern at this point is that the removal date for her braces is in limbo now! She was set to get them taken off in February, and now that timing is very much in question. Poor kid! It's always something. I think it's good that we have her previous medical challenges to help us keep this snafu in perspective. It's a nuisance -- but nothing more. Praise God for that!
Katie will be graduating from High School in May. She has already been accepted to Asbury University, which absolutely thrilled her. I thought it was expensive having a teenager in the house. Now I realize that it is CHEAP compared to what it costs to have them in a college dorm! HA! Regardless, we're thrilled for her and we're looking forward to this exciting time in her young life.
Kenzie continues to grow and thrive. She's a constant source of joy in the family, and we absolutely adore her!
I think that's the latest from the McKee household. As always, we greatly appreciate your prayers for Erin, and for all the kids dealing with Fanconi Anemia.
Until next time...
- Barb, Kevin, Katie, Erin and Jess, Brett and Kenzie!!
Friday, September 17, 2010 2:35 PM CDT
Greetings from Ohio! Things are going well at the McKee household, and as stated a million times before on this website -- we are grateful!
On August 18th, Erin became an Aunt, and Kevin and I became grandparents to an absolutely adorable baby girl named McKenzie. She's everything we dreamed she would be, and so much more! Jessica and Brett are fabulous parents, and I am, again, humbled by how blessed we are as a family.
I recently read an update to a little boy's website -- and his mother eloquently put into words exactly what my heart has been struggling to say for the last 5+ years. I hope she will not object to my "plagiarizing" her words, as they are so absolutely spot-on for where I find myself these days. She wrote:
"Please continue to pray for my son, and for his forever CURE from cancer. In addition to this, please pray that we all move forward with confidence, and without looking back. We have learned a lot and grown in our faith, and I wouldn't change that for the world -- but we still struggle with what life is supposed to look like now. Please pray that we don't carry fear in our hearts, but instead, an understanding of what has happened, and why it has happened, and most importantly that God has a bigger plan than we could have ever dreamed for our son. We praise Him, not only for our son's restored health, but for the blessing of good health for all of us. We know now that our health is not a right --- it is a gift."
How profound those words are to me! I share them in the hope that they might give comfort to some of the other parents out there who, in spite of their child's successful treatment, find themselves fearfully looking over their shoulder from time to time. I resolve to move forward with gratitude, without fear, and with a thankful heart for the GIFT of good health for Erin, and for our entire family.
As always, thank you so much for caring about Erin, and for your prayers on her behalf.
Until next time...
- Barb, Kevin, Jessica, Katie, Erin (and Kenzie!!)
Monday, July 19, 2010 12:07 AM CDT
Greetings Friends! Thanks so much for checking on Erin.
Just a quick update concerning Erin's visit to see Dr. Rose a week ago. Her latest labs revealed that her triglycerides were fine, and that the elevated counts from back in June were a result of her not fasting prior to the lab work being done. We suspected as much, but it was nice to have that confirmed.
They repeated her tyroid labs as well, and while her TSH level was lower than back in June, it was still outside the normal parameters, so we've started her on a very low-dose of hormones. Dr. Rose assured me that this insignificant amount would cause no side-effects whatsoever, and that it would simply be replacing what Erin's body should naturally be making at this point in her growth and development. Dr. Rose told us not to be surprised if Erin's energy level improves. She said many of her patients do not think they need the medicine -- until they start taking it, and they are pleasantly surprised by how good they feel and how their energy level improves.
So that's where things stand. Erin and Katie are on a week long mission trip. It's very quiet around our house right now. I can't decide if it's wonderful -- or torture. Perhaps a little bit of both!
Erin will be starting soccer again in the next couple of weeks. Another summer is slipping through our fingers! No complaints, however. Life is good!
Until next time...
- Barb, Kevin, Jess (McKenzie), Katie & Erin
Monday, June 28, 2010 1:01 PM CDT
Greetings friends! Thanks so much for faithfully checking on Erin.
Greetings, also, to the families who are attending FA camp at Camp Sunshine right now! Dr. Harris asked us last week (yet again) if we were planning on attending camp this year, and I had to tell him "no" (yet again). I think the ideal time to go would have been immediately after Erin's diagnosis, when we were devouring every piece of information on FA we could get our hands on. However, she was diagnosed in September, so we narrowly missed camp that year. By the following year, I was just too overwhelmed to consider camp, and the year after that we were in Minneapolis undergoing Erin's transplant! Now, it's tough to commit. Do I want to immerse Erin in this at the age of 13? I think she's mature for her age, and would genuinely love meeting the other kids, but honestly, it's a scary thing. Perhaps the truth of the matter is that SHE would do fine -- but I would be a wreck. I try to keep myself educated on developments in the FA world. The draw for me would be getting the up-to-the-minute information on treatment and post-transplant preventative care. I feel truly blessed to have doctors treating Erin who are on the cutting edge when it comes to understanding FA. They are among the best in the world. So, ... perhaps we'll make it to camp another year. I believe that when the time is right, if that time comes, we'll know. For now, we're hanging closer to home.
Erin's check-up went well last week. There are a lot of new faces on the Hemoc floor. Erin had a nurse we remember from our days there in 2005/2006 (Pam). What a sweetheart! I was startled to get a call from our pediatrician the day after our visit to Children's warning me that some of Erin's labs were "off". (ARGH!! I wasn't expecting that!!) Turns out, her triglycerides were very high -- but further research on my part told me that we had made a boo-boo the day of her visit. Nobody told us to "fast" prior to her lab work (the last appointment of a very long day at the hospital). We literally ate lunch and raced upstairs to the Hemoc clinic to meet with Dr. Harris and have her lab work done. I'm sure her lunch (and her very robust breakfast earlier in the day) contributed to her skewed Triglyceride count. Her thyroid counts were off a bit, too. We were not able to meet with Dr. Rose (who is at Camp! If you see her, tell her we'll be visiting her soon!!), so we'll be making another trip to Cincinnati Children's to repeat labs and visit with Dr. Rose. Other than those two things, our visit was absolutely wonderful. Erin has grown 2 inches since her visit last year. She's taller than most of her doctors and nurses now! We are officially 5-years post transplant. What a journey! Maybe she'll write a book about it some day.
Erin is working for friends this summer babysitting their two little girls. The girls are sweet, and Erin is loving it! Katie is working as a nanny, and it's been a great summer for her, too. Now that Katie is driving, I'm particularly enjoying the fact that she can finance her own activities now. I think she's developing an appreciation for how tough it is to actually earn that $20 bucks I've been handing over whenever she needed it over the last several years. It's entertaining to see how frugal she has become now that she's spending her own money! HA!
That's the latest from this end. I will plan on updating again after we meet with Dr. Rose and get a more accurate reading on Erin's thyroid labs. Everything else looked great at her check-up, and we remain grateful beyond words.
As always, your prayers for Erin, and for the other children with FA, are greatly appreciated.
Until next time...
- Barb, Kevin, Jess (& Kenzie!!), Katie and Erin
Friday, May 14, 2010 12:59 AM CDT
Well, I know this update is a couple of days late -- but that doesn't mean we have not been celebrating Erin's 5-year BMT anniversary! I just cannot get over the fact that it has been 5 years since she underwent her transplant. To look at her today, you would never dream that she has been through such a grueling experience. I will say it for the 1,000th time -- we are grateful people, and we feel very, very blessed!
Erin continues to thrive. We took her out for dinner on the 11th and let her choose where she wanted to go to celebrate. She chose Joe's Crab Shack. Kevin and I went to Joe's with friends several months ago, and Kevin really wanted to bring the girls back there. As Erin was considering her options for our celebration dinner, she said she wanted to go somewhere that she has never been before, and so she chose Joe's. Jess was able to join us for dinner, and that alone made it a celebration in Erin's eyes! The weather was nice, the restaurant was not crowded, and we all had a great time! Ironically, Kevin and I had seafood -- but Erin and Katie had chicken, and Jess had a salad. Go figure!!
Erin will also be going to Kings Island to celebrate this momentus occasion with several of her friends in early June. She's looking forward to that. This will be a little like a birthday celebration, except that she can never plan anything fun outdoors on her birthday because it falls late in the year when the weather just isn't cooperative. We actually regard her bone marrow transplant anniversary as a birthday of sorts, because it's the day that she was given a second chance at life. We've often referred to May 11th as Erin's "re-birthday."
I'm in the process of making a small scrapbook for Erin's 5-year anniversary. (I've also purchased all the materials to make her a full-size scrapbook of her journey through transplant. That is on my short-list of things to do as soon as I retire from work, and the girls are off in college!!!) We have a lot of pictures that were taken during her time in Minneapolis, and there have been so many pictures since then, that I think I can put together a really nice little piece of memorabilia she can hang on to and share with her children one day. I am looking forward to getting started on this.
Other than that, there isn't much to report. The kids are chomping at the bit for school to be over. I believe they have 9 days left.
Katie got her drivers license today. Overall, I'd say this has been a banner week in the McKee household!
As always, thanks so much for checking in on Erin. We so appreciate your prayers for her, and for all the other children who are struggling with FA. We head back to Cincinnati Children's Hospital in mid-June for her annual check-up appointments. In spite of everything, I still get a little sick feeling in the pit of my stomach every time we head down there. Thankfully, as the years go by, we have as many good memories there as we have difficult ones. Time has a way of softening the edges around the tough ones. We are also cognizant of the fact that Erin's story is not the same as many other FA transplant patients and friends, and that thought is extremely painful and sobering.
Thanks again for your prayers. Happy Anniversary Erin! Mom loves you so much!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, April 28, 2010 11:43 AM CDT
Greetings, and Happy Spring! Hope all of our friends are doing well.
We just scheduled Erin's annual transplant check-up appointments. Since she sees so many specialists, it's getting harder and harder to get all the appointments coordinated. This year, her check-up will take 3 days to accomplish! Oh well. We have such a great group of doctors that we deal with, that the inconvenience is worth it. We may end up "dividing and conquering" this year. I'll take the first two days worth of appointments, and Kevin will take the Hemoc and Endocrine appointments on the third day. She will have a follow-up pulmonary function test this year. She had her first pulmonary function test since her transplant last year, and while the results were okay, they were slightly below what Dr. Harris wanted to see, so we will repeat the test this year. I'm hoping for good results this time around. Heaven knows -- that kid has plenty of hot air, so I can't imagine why her results wouldn't be off the charts... (Don't tell her I said that!)
It's hard to believe that it's been 5 years since Erin's transplant. As we get farther out, it seems like light years ago. However, I follow a number of children who have been recently transplanted, or are preparing for transplant, and the memories of Erin's trip through come rushing back in an instant. Sometimes, I look back and wonder how in the world we ever did it -- but mostly I'm just incredibly grateful that things went so well for her. Nobody gets an easy trip through transplant -- nobody. Even if the outcome is excellent, the experience is absolutely miserable. One thing is for certain -- we try never to take Erin's good health for granted. She is, and will always be, my little miracle!
Life has been a little bit crazy at the McKee household since I last updated. Kevin got a Harley Davidson motorcycle last Christmas. He was out riding with a good friend on April 1st, and ended up having a pretty serious accident. He ended up breaking both of his arms -- but in true "McKee" fashion, he has fought his way back, and he returned to work this past Monday. He's still getting physical therapy for his injuries, and he's not back to his full-time schedule just yet, but he's almost there. Yet another reminder that life is precious. (I think God sees our family name pop up on his "Please Save This Precious Life" computer screen, and he says, "NOT THEM AGAIN!" He he he) Anyway, we are, yet again, counting our blessings.
Katie is preparing for her first-ever prom! We are about a week away from the big day, and she's excited. She's had her dress for months now -- and we picked up the last of her accessories last weekend. I'm excited for her! It should be a wonderful evening, and Kevin and I absolutely love her boyfriend. Aaaaaaahhh. To be young again...
And ... probably the biggest news yet ... Kevin and I are going to be GRANDPARENTS in August. Jess and Brett are expecting a little girl (McKenzie, or "Kenzi" as we are calling her...) this summer! Erin is literally OVER THE MOON with excitement. Actually, we all are! This is practually an answer to prayer for Erin. Since she's the baby of the family, the thought of a new little addition that she can play with and love on is just about more than she can take. This is going to be a great summer!! Jess purchased her first home. Actually, they are set to close on it this week. Brett will be finished with college in about two weeks. Their lives are moving at the speed of light! It's crazy and exciting, and we could not be happier for them.
Wow! Can you tell that our lives have been pretty crazy? We are feeling very, very blessed, and excited about the future. We're keeping all of our transplant and FA friends in our thoughts and prayers. Thank you for continuing to check on Erin. We are, as always, very grateful for your prayers for Erin. I'll try to update again after our appointments in June.
Until next time...
- Barb, Kevin, Jess (& Kenzie!!!!), Katie & Erin
Tuesday, February 2, 2010 7:30 AM CST
Greetings, and Happy 2010! It's been a while since we've updated Erin's page -- and I think it's safe to say that no news is good news! The holidays were very nice. As the kids get older, there is less of the contagious excitement that I've always enjoyed -- but it's nice in a new, more relaxing way. Erin is doing great, health wise. She's involved in so many things right now I don't know how she keeps up! Actually, I think I DO know how she keeps up. I got our cell phone bill yesterday -- and just out of curiosity, I printed it out to see how each of us are using our phones. I think I used 47 minutes of air time, and sent about 70 texts. I share that for comparison purposes -- Katie sent almost 5,000 texts, and Erin sent 11,417 texts. CAN YOU BELIEVE THAT??? That works out to be approximately 380 texts a DAY, or roughly 16 texts per hour. I think that comes out to roughly one text every 3-4 minutes of the day. I think we need to do some type of intervention on that kid...
The weather in Ohio has been pretty cold. We've had the threat, several times, of some significant snowfall but it really has not materialized. I think that's probably a good thing, now that the holidays are over. Right now, we're all just looking forward to spring.
Jessica has a lot of exciting things going on in her life right now. She's been house-hunting for the last several weeks, and she thinks she might have found a "keeper". It's hard to believe she's grown up and ready to start her own life and family! Brett will graduate this coming May, and they're beginning to get their ducks-in-a-row for their life together. It's really very exciting, and we love them both very much.
Katie is getting excited about her first Prom! We thought we were being very clever by sneaking out last weekend to start looking for prom dresses -- however, idiot that I am, I discovered that I really don't know ANYTHING about preparing for a prom. There were dozens of girls out doing the same thing, and there was even a "prom dress" fashion show going on at the mall. This is a learning experience for both of us! Katie also started driving school this week. I have to laugh when I think about it. I remember my brothers driving my mom NUTS to let them get their drivers license. Katie has never been particularly worried about it, so we haven't been in any hurry to get her signed up. Lately, she's shown a little more interest, so we figured now was the time. She's had a car in the garage for months now -- and it pretty much just sits there. There will definitely be advantages to Katie having her license, but I must admit that I'm a little nervous about it too. One thing is for sure -- she's going to have to find somebody else to take her out driving. I am a total SPAZ -- and when I'm in the car with her, it's just not an environment conducive to learning. She made that pretty clear to me last night. (What the heck?! I'm just trying to keep her alive!) Seriously -- Kevin's going to have to take the helm on this one. He's a lot more relaxed when it comes to stuff like this. I need to be shot with a tranquilizer dart before I get in the car with her...
Other than that, there isn't much to report. We're just hanging on until the weather turns nice. We're getting more and more involved in the teen program at our church, and we're loving it! It really is the nicest group of kids you could ever hope to spend time with. I'm sure they think I'm a dork extraordinnaire -- but whatever. I took over the role of Youth Council Chair effective January 1st. Now, I'm just crossing my fingers that I don't screw it up. They have a wonderful program in place for the kids, and it really is a great group of young people and volunteers. I'm loving it!
We continue to remember our FA friends, and transplant friends in our daily prayers. We also appreciate your prayers for Erin.
Until next time...
- Barb, Kevin, Jessica, Katie and Erin
Tuesday, November 17, 2009 1:55 PM CST
Greetings friends! Thanks for checking on Erin. We've had a busy, but mostly uneventful couple of weeks. I was fortunate to be able to participate in a spiritual retreat last weekend called the "Walk to Emmaus." It was a wonderful, uplifting time, and I am convinced that God wanted me to be there. I participated in the Walk last year as a "pilgrim." This year, I was asked to work at the Walk, and it was like getting a double-blessing! The Walk has a way of putting your life into perspective -- and at this time of year -- what a gift that is! Sometimes, in spite of all of life's blessings, you feel like you are under spiritual attack. With all the bad news in the FA community lately, it has felt that way for us. We've also had some other worrisome issues in the family (not related to Erin's health, thank goodness!), but those have resolved as well. Overall, we are feeling very blessed and grateful this Thanksgiving season.
Erin returns to Children's Hospital on Thursday for her six month check-up. This is the first time since her transplant when we are only required to see ONE doctor (Dr. Harris) at her check-up. That, in itself, is a huge milestone! Her check-up last May was a good one, so they made the decision that we did not need to be checked by the endocrine doctor (Dr. Rose), the ENT (Dr. Zimmer), or any of the others until next May. So, we'll pay a visit to see Dr. Harris, wish him Happy Holidays, and be on our way (he he he). Well, that's not entirely the truth. They'll do lab work on Erin, which she will NOT be happy about, and I have arranged for her to get the H1N1 shot while we are there (which she will also NOT be happy about). What a blessing, though, that our worries are so small. A blood draw is NOTHING compared to what some children are going through right now.
Erin did not choose to trick-or-treat this year (sigh). It's officially over, I guess. She and a friend helped hand out some goodies from our church, so I think she still had a fun evening. She is done with soccer for the year. It wasn't her teams most successful year, but all the girls had fun, and I believe that's the most important thing anyway. Just seeing that kid running on a soccer field makes me feel like we won the lottery!
Overall, we are poised to have our best Christmas ever! My head is finally in the right place. I'm really focusing on "doing" this year as a family, rather than "buying" or "getting." It has finally started to dawn on me that my kids don't really care what gifts they get. The gifts don't result in any type of lasting joy. I'd like to see the focus shift to doing for others, with less emphasis on us. This could be our most fulfilling Christmas ever.
That's the latest from our little part of the world. Thank you for checking on us. Thank you for your prayers for Erin. Please remember all of our friends in the FA world who are struggling or grieving right now. I honestly live for the day when this miserable illness is wiped off the face of the earth.
Until next time...
Barb, Kevin, Jessica, Katie & Erin
Wednesday, October 28, 2009 12:41 AM CDT
Well, another day, another update. And, sadly, another loss in the FA community. I'm sure everyone is getting weary of depressing posts, but lately, there just isn't much good to share. In the last several weeks, the FA community has lost the following children: Dylan, Diana, Anothony, and sadly, less than two weeks ago Samantha McCarthy passed away from complications related to her illness and transplant. I did not know the other children personally, but we did know Sam, and frankly, this loss just hits really, really close to home. As Erin has gotten older, Kevin and I have been less "secretive" when we talk about children who are recovering from transplant, or having serious issues. When she was younger, I just didn't want to share anything that would make her fearful or upset. Now, she's older, and slowly but surely, she's beginning to really appreciate how serious her illness is, and how fortunate she has been. I DREADED telling her about Samantha. When I finally summoned up the courage to tell her, we both just sat in her room and cried until there were just no more tears. I hate that these are the harsh realities of Erin's life. Kids her age should not be mourning the death of friends. It just isn't right!
For a while, I really, really believed that we were beginning to turn the corner when it came to transplant success with FA patients. When we were in Minneapolis, there were a total of 5 FA families there for transplant at the same time. Of the 5 families, 4 of the children are alive and thriving today. (Praise God for that!!) The one precious girl we lost passed away a year and a half post-transplant due to lung complications. I thought I would never get over her death! Now, experiencing it all over again with Samantha has been a gut-wretching, miserable experience. My prayer is that eventually, by the grace of God, her family will find peace. I just can't imagine...
Now that I have depressed you thoroughly ... I'll just take a few minutes to bring you up to date on the goings on in the McKee household. Erin turned 13 years old on October 22nd (another hearty Praise God!!). Unfortunately, she was recovering from the H1N1 virus on her birthday. I must admit that her illness kept me on pins and needles for several days -- but I'm pleased to report that her awesome new immune system took care of it. It was a crummy way to spend her birthday, but we've celebrated several times since then, and she still has her "friend" birthday party coming up, so in the end, it's all good.
With the unseasonably cool weather we've been having in Ohio -- Halloween is something of a big question mark this year. First of all, the jury is still out with Erin regarding whether or not she even wants to trick-or-treat (... she is, after all, a TEENAGER now! Ha!) I honestly think she's just waiting for ONE of her friends to commit to going, and she'll be there!! If not, our church hosts a really cool event on beggars night called a "Holy House" -- and they are always looking for volunteers. I think that's where you'll find Kevin and I on Halloween. Katie has offered to take Erin around town if she decides she wants to go. It's funny -- she's a teenager, and she'll be driving in less than THREE years -- yet I can't stop thinking of her as my baby. Hard to believe the Trick-or-Treat years are over. When I'm tempted to get melancholy about my girls growing up, I just remind myself of all we've been through, and I realize that "growing up" is a gift, and not something to be depressed about. What a JOY that my girls are GROWING UP! We are so blessed!
Hope all is well in your neck of the woods. Hope the upcoming holiday season will be good for each of you! And thank you, as always, for your continued prayers for Erin and all of the other children struggling with FA.
Until next time...
- Barb, Kevin, Katie, Jess and Erin
Friday, September 25, 2009 11:12 AM CDT
Greetings. Thank you for checking on us. Everything is going well in the McKee household, and for that, we are thankful.
I am not up to writing the usual "upbeat" post today. There are just too many children who are suffering in the FA world right now, and I am at a loss to know how to help them. We've lost precious lives in recent weeks, and each loss is like a powerful kick in the gut -- even though I have never met these children. The phrase "but for the grace of God go I," just keeps repeating in my mind. I have felt a good deal of guilt since Erin's transplant because I have not thrown myself into the cause. It sounds sheepish, I know -- but for me, her diagnosis, subsequent decline and transplant experience pushed me to the brink of what I thought I would ever have been capable of coping with in this lifetime. My daughter is among the absolute most precious things in my life. I would liken it to having spent a good deal of time on the front lines of a bitter, horrible war -- watching people die to your left and to your right. Then, miraculously -- you get a pass to leave the war zone and go to a safe, peaceful place. You never forget your time on the front lines, but the thought of ever returning there causes you to become physically and emotionally ill. That's just about where I find myself, and I am tormented by that. Being on the front lines is not something any of us have chosen. I need to find my place in the world of FA and try to make a difference.
One other reason I've been reluctant is that I treasure the "normal" life that Erin is living right now. She has worked so incredibly hard to get where she is. She is entitled to the peace. I also know that the peace we are enjoying may be temporary. We remain ever-vigilent, but we know what can happen. These precious, peaceful days are a treasure.
Today, I would ask you to lift up our friend, Samantha McCarthy. She is well past the 1-year post transplant mark, and she continues to struggle mightily. Sweet Nicholas Boggs received some difficult news this week, too. I beg God to touch these precious children -- to restore their health completely and to give their parents peace, comfort and rest.
Your prayers are, as always, greatly appreciated.
- Barb, Kevin, Jess, Katie & Erin
Wednesday, August 26, 2009 12:44 AM CDT
Greetings family and friends! Thank you for checking on us! The girls returned to school this past Monday. Erin is now officially a 7th grader. We went to Open House at the school last Thursday evening. Both of the girls have fantastic teachers, and their classroom assignments are great. We're two days in to the new school year, and so far -- so good!! (ha!)
The weather has been beautiful in Ohio! Typically, our weather in August can be described with two words: "hot" and "muggy". This year -- not so much! It's been unseasonably cool and we're all enjoying it. By cool, I mean temperatures in the mid-70's rather than the upper 80's. It feels more like fall most of the time than summer. I'm already starting to pull some of my fall decorations out of storage, and Kevin is having a FIT! (He's a "summer" kind of guy -- I'm a "fall" kind of girl. Go figure!)
Soccer is in full-swing. Erin practices twice a week, and she will have her first game the Saturday after Labor Day. I'm relishing the next two weekends, because I know once her games start, we're going to be super-busy until the beginning of November.
Katie is a Junior in High School. She is enjoying the fact that she is FINALLY an upper classman! Her schedule is pretty ambitious for the first trimester. Naturally, that's the busiest trimester for extra-curricular activities as well. The homecoming parade and football game will take place on September 18th. That's always fun! Katie will be in the parade and at the game with the band. Kevin is going to use his truck to pull Erin's soccer team float in the parade. Homecoming is always a great time in our little town. I swear - - just about every child in town is in the parade in one form or another (boy scouts/girl scouts, football team, cheerleaders, soccer team, member of 4-H, in the band, etc., etc., etc.) and just about every person in Bethel that owns a truck ends up pulling a float. If the weather is nice, it's just about as much fun as you can have in "small town" America!
Jessica graduated from Wilmington and is working full-time in a physical therapy office. She loves it! We're hoping to travel to Virginia to see Brett play football a couple of times this coming season. This will be his last year playing college football, and we're determined to make it up there to cheer him on! I really can't wait to go. That should be a lot of fun. Jess is planning on starting grad school this winter. It will be here before you know it!
And that's the latest from our end. Hope all is well with our friends out there! Please remember Samantha McCarthy in your prayers. She has moved from Cincinnati Children's Hospital to a hospital closer to home, and she's dealing with some post-transplant lung issues. She has been such a trooper throughout this whole miserable process (transplant), and she really deserves to feel good and be at home with her family. Please also remember Tara Cleary in your prayers. She is about one-month out from her transplant,and she is doing well. Even under the best circumstances, however, it's never easy. Every prayer is appreciated!
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Tuesday, July 21, 2009 1:19 PM CDT
Greetings! Thank you, as always, for continuing to check on Erin. We just returned from a week at the beach, and it was great! The weather in Ohio has been unseasonably cool so far this summer (last week we had two days where the temperature did not even make it to 70 degrees!). That's hard to imagine, particularly since we normally have hot, dry conditions by this time of year. I have noticed that the crops are looking outstanding this summer, so I'm sure the local farmers are ecstatic after several years of really challenging growing conditions. I guess every cloud really does have a silver lining!
We met with Dr. Rose at Cincinnati Children's hospital just before we left on vacation. Erin's glucose tolerance test results showed that her body is slower reacting to the glucose they gave her -- but it still managed to process it normally. Woo Hoo!! No intervention at this time. We'll just continue to monitor her. I asked Dr. Rose if the "slow to react" part indicates she is moving toward diabetes, or if it's possible she'll just always process sugars more slowly than the average person without ever requiring any medical intervention -- and Dr. Rose said it's entirely possible that Erin will be able to manage this without it ever becoming a real problem for her. That was a HUGE relief. Sooo -- everything looks great from her annual check-up. We'll go back to Cincinnati Children's in November for a "mini" check-up where we will only see the hemoc doctors. Everything looks great and we are thankful!
Vacation was awesome -- but, in true McKee fashion, it was more of an adventure than we intended. Kevin didn't feel great when we arrived in Florida, and I was really worried he was going to be sick while we were down there -- but he rallied and ended up fine (crisis #1 averted!). Then, the beautiful condo we rented had a washing machine that malfunctioned and it flooded part of the condo while we were at the beach the second evening we were there. The condo owner sent people to clean up the mess and repair the washer -- but we ended up with damp carpet for several days, and had fans running 24/7 for most of the week (crisis #2). And finally, after a week of sun, rest and relaxation (except for items #1 and #2 above), we headed home on Saturday and ended up with a bolt in one of the tires of the car (crisis #3!). After stopping at several places that did not carry the size tire we needed -- we finally located a tire dealer that not only had the tires in stock -- but they gave us a great deal on a new set of tires and changed them lightening fast! If that tire company had any locations in the greater Cincinnati area -- we would be customers for life! I was really beginning to wonder if we were going to have to make the drive home (remaining 6 hours) on that little "fake" spare tire. That would have been stressful!
Anyway ... overall it was a great trip, and we made it home with our sense of humors intact and our checking account nearly empty (ha!). The down-side to going to the ocean is that the pool at home just doesn't have the same appeal it did before the trip. Neither of the girls seems to have much enthusiasm for going back to the pool since we've returned, and I can't say that I blame them. I'm scrambling for something to keep them busy for the remainder of the summer! In another week or so, there will be some school activities that will be starting, so that should help. The girls are also involved in some activities at church, and that has kept them busy, too.
I do have a special prayer request for a couple of FA friends. Please remember Samantha, who is in-patient at Children's right now dealing with some GVH issues post-transplant. She's at the stage where she is just SO READY for this stuff to stop so she can begin to feel better and get back to being a kid again. It's just so frustrating! Also remember Dylan who is in-patient in Minneapolis dealing with some post-transplant issues, too. As you can imagine, Sam and Dylan's parents are exhausted, too. I long for the day when there will be a cure for this miserable disease so that kids won't have to go through what Sam and Dylan are going through right now. Please pray for these families! And as always, your prayers for Erin are greatly appreciated as well.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, June 24, 2009 1:12 PM CDT
Greetings, and thanks for checking on us! Summer is here, and life is good!
Erin had a check-up at Cincinnati Children's in late May, and all of the test results we have gotten to-date look great. We will be meeting with her endocrine doctor this Friday to review her glucose tolerance test results. Since Erin's transplant, this is the doctor that watches her the closest for any signs of growth or developmental problems, and she seems to be very happy with Erin's progress. I know for a fact that she's grown (pretty significantly!) in height since her appointment last year, so I am anticipating a good report from Dr. Rose. I will try to update after our visit on Friday.
The school year is over, and Erin had a FABULOUS year! She was on the Principal's list (straight A's), and I think it's safe to say that she is excelling in Middle School. Naturally, there is the drama that goes along with being a Middle School girl -- but overall, I'd say she's doing extremely well. It's hard to believe that she is officially a 7th grader now. Wow -- do I feel old!!
We're all heading to the beach in a couple of weeks for a little R&R. I honestly can't wait! I've already started packing odds and ends for the trip. Kevin told me he thinks I'm getting a little bit ahead of myself, and I'm sure he's right, but I guess I'm just hoping that if I start preparing now -- it will get here SOONER! (Wishful thinking, I'm afraid) Anyway, we're all psyched about the trip. It's been quite a few years since we've been to the beach.
The temperatures have gotten into the 90's this week (the highest of the year, so far), so the kids are enjoying the pool. We're also really enjoying the deck that Kevin put on the house last year. It is absolutely perfect, because the deck is completely shaded beginning in the late afternoon, and there is usually a nice breeze blowing across the back of the house just about every evening. Even on the hottest days, it's very comfortable back there. Soooo, ... if you stop the the house looking for us any evening during the summer, just come around back and there is about a 90 hance you'll find Kevin and I sitting out on the deck!
Sooky (Kevin's new puppy) is adapting nicely to life in the McKee household. She is growing by leaps and bounds, and our other dogs (Sadie and Zoey) don't know what to think about that! I can almost see the look of astonishment in their eyes every morning as she greets them on the stairs, and she's bigger than she was the night before! They are all such good dogs, and we really enjoy having them in the family.
Jess started her new job about a week ago, and seems to like it very much. Right now, she's part-time, but she expects to be switching to full-time by the end of July when some of the other athletic trainers go to work for area high schools. She's planning on returning to school in the winter quarter to pursue classes toward becoming a PA, which would open a lot of career doors for her. For now, we're just enjoying her being home again, and getting to see her more often.
I guess that's the latest from our corner of the world. We're all, thankfully, doing very well. The kids are enjoying their summer break and we're all keeping plenty busy. Life is good. Please remember a couple of friends who are struggling with FA-issues right now: Nicholas, Diana, Samantha, Dylan and Charisse.
As always, your prayers are greatly appreciated. Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, May 15, 2009 12:34 AM CDT
Greetings, and thanks for checking on Erin! It is now mid-May, and things are beginning to wind down for the girls this school year. I think I can safely say that both Katie and Erin are more than ready for the school year to wrap up! They both appear poised to end it on a high note, so I'm keeping my fingers crossed. (HA!) We attended Jessica's graduation from Wilmington College last weekend. Talk about 4 years that have flown by!! (I wonder if Jess would agree with me on that?) It was especially awesome for Erin and I -- because we were in Minneapolis for Jessica's High School graduation. Erin was still in-patient, and I remember that Kevin and Katie flew home early the morning of Jess's graduation. Katie stayed home for a couple of weeks afterward, but Kevin flew back to Minneapolis that same night. Both Erin and I were really disappointed that we were not able to be there -- so we wouldn't have missed her graduation last weekend for the world! It was wonderful, and we know that Jess has a fabulous future ahead of her.
The weather here is FINALLY trending toward the warmer temperatures, but we try not to get too accustomed to it because we know that a 60 degree day is still a possibility! What I've noticed is that if the temperatures warm up, the rain inevitably follows. We are all very anxious for a warm, SUNNY day! We started to re-do some of the landscaping in our front yard the last nice weekend we had -- and now, several weeks later, we're beginning to get a little frustrated and anxious to get it done. We really ought to relax a bit. We have plenty of summer ahead of us to get it done, I'm sure!
The latest excitement in our household has been a trip to the orthopedic doctors office after Erin took a fall while roller skating. Initially, we thought perhaps she had just sprained her wrist, but when the pain was still pretty intense after 24 hours, I took her to see the doctor. Sure enough, she has a fracture in her left arm near her wrist. She is currently sporting a neon orange cast that she will have to wear for the next month or so. Like everything else, she takes it all in stride. If everything goes as planned, it should come off at precisely the time Erin will be ready to hit the pool, so it should work out fine.
Speaking of excitement ... We also added another puppy to our household. Kevin has been surprisingly tolerant of our two earlier "acquisitions" (Sadie and Zoey). They are the sweetest dogs, and honestly, they are no trouble to have around the house. The girls are crazy about them, and I enjoy them too. For years (since we had to put Cocoa to sleep) Kevin has been longing to get a bigger dog that can hang with him while he's outside working. He decided he wanted an Australian Shepherd puppy, and he got his wish a week ago. We have a picture of her, and I'll try to add it to the website. She has the most striking blue eyes I have ever seen, and she's a little spit-fire. I think Kevin has his work cut out for him... Poor Sadie and Zoey walk around the house with a "deer in the headlights" look that just breaks my heart. It's like they don't know what hit them...
Erin returns to Cincinnati Children's Hospital next week for two days worth of testing and appointments for her "4-Year Post-Transplant Check-up." (What a joy to be able to type that!) As the years go by, it gets harder and harder to remember those brutal days during transplant, and I believe that is a merciful thing. This year, they've added in some scans and tests that we have not had to do for the last several years. Frankly, I'm glad to get her thoroughly checked over. We REALLY want to stay on top of things now that she's getting closer and closer to her teenage years.
We are getting pretty close to having new neighbors. Most people wouldn't find that terribly exciting -- but where we live, it's VERY exciting! For a while, we were the only house on our street (and it's a fairly long street). The only neighbors we have were in the process of building when we returned from Minneapolis back in 2005. Since that time, it's just been our two families. Our new neighbor seems very nice, and she will be a welcome addition to the neighborhood. She's building a really nice log cabin, and it's been fun watching them build it. We often rent cabins when we vacation in Gatlinburg, Tennessee, and I told our neighbor recently that every time I walk inside her house, it just feels like I'm on vacation -- and I LOVE it!
I guess that's really all the news from Bethel, Ohio. Your prayers for a couple of FA friends would be greatly appreciated. You will remember Nicholas Boggs from some of my earlier posts. He has experienced some improvement in his hemoglobin counts in recent weeks (Praise God!), but he became ill this week and has been hospitalized with some type of cold or virus. I know his weary mother would appreciate your prayers for a quick, and complete, recovery for Nicholas. Also, another little FA friend who recently returned home from her transplant has been hospitalized in her home town with lots of stomach/digestive problems. Her potassium and magnesium have been dangerously low, and the doctors at Cincinnati Children's are monitoring her from afar to determine if she needs to make an emergency trip back to Cincinnati. I know her family would love it if she recovered quickly and that would not be necessary. Please keep Alicia in your prayers as well.
As always, we greatly appreciate your continued prayers for Erin's good health. Thank you so much for all that you have done for her, and all that you continue to do.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, March 18, 2009 8:25 AM CDT
Greetings! Hope spring has made it's way to your corner of the world! We are finally starting to experience some consistently warmer days, and we are loving it! I have read on other websites that Minnesota is still getting some off and on snow. I feel bad for you folks! By March, all we can think about here in Ohio is SPRING!
We've been keeping busy. Erin had a big project due in her GATE class (GATE is the gifted program in our school district). The kids had to do a big research project and all of the projects were combined with projects from the GATE program in the nearby Felicity school district, and then all of the projects were judged. Erin took first place in the 6th grade division for her project on (... a little drum roll please...) Fanconi Anemia! Woo Hoo! She finally got something positive out of her experience with FA! Her project was really pretty impressive for a 6th grader, but I believe she had a bit of an advantage over the other kids. We have a TON of information right at our fingertips. She also had a lot of first-hand knowledge of her subject matter that the other kids probably did not have. Regardless, I personally think she REALLY earned this trophy! It is a small consolation prize for all that she has gone through over the last several years. She interviewed Dr. Harris as part of her research. I thought that was pretty cool! Overall, it was an excellent experience. As we poured over the photographs we have from her bone marrow transplant, it really brought back a lot of memories. It just reinforces that life is really, really good! We are so blessed, and so thankful!
Kevin got a new truck, and he is a happy camper right now! I think I told you in our last post that once he got a 4WD truck, the weather would take a turn for the better, and I believe I was right on target with that. The truck seems like a small price to pay for warm weather. (he he he) Katie is ready to get her temporary drivers license. Kevin took her to the license bureau the weekend before last, and the computers were all down, so we will have to take her back. It's funny how different girls are from boys! I remember my brothers driving my mom CRAZY to get her to take them to get their license. Katie is pretty laid back about it. She will be getting my car as soon as she has her license, and her big thing now is making me feel guilty because I have continued to drive it. (She keeps asking me to please STOP driving HER car. I told her that until she has a license, it's not HER car!) Imagine the nerve!! HA!
We will be heading back to Cincinnati Children's Hospital in May for Erin's 4-year check-up. It is so hard to believe that it has been 4 years since she underwent her bone marrow transplant. In some ways -- it feels like it was yesterday, and in other ways, it feels like it was a decade ago. Looking at the pictures from her transplant, I can't get over how much all our girls have changed since then.
I guess that is the latest info. from our home. Hope all is well with our friends and our FA family. As always, your prayers are greatly appreciated!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, February 9, 2009 10:32 AM CST
Greetings from the artic tundra! Actually -- that was last week. We've gotten snow, snow and more snow over the last couple of weeks -- but this past weekend the temperatures got into the 60's, and now we are finally experiencing some pleasant mild weather.
Things are going well at our house. Erin has had her share of colds this winter, but overall she has bounced right back from each one, so we know her new little immune system is just chugging along. She also began "Phase II" or her orthodontic treatment, and last Monday the braces went back on. Now, instead of the few braces she had with Phase I -- she has a mouth full, with elastics (for the time being, anyway). After a few rough days initially, she has adapted and now it's back to business as usual -- minus corn on the cob. I think the toughest part about this Phase of treatment is that the orthodontist has estimated she will be wearing braces for 2 years this go round. That did not make Erin happy, however, she still should have her braces off before the end of eighth grade, and that's not bad. Katie only had to wear hers for a little over a year -- but it was all during high school, so Katie would probably argue that 24 months during middle school is much better than any time in High School.
As I mentioned above, we've had snow, snow and more snow over the last couple of weeks, and frankly, we're ready for it to be over! The last two days have been unseasonably warm, and that has been a very welcome change of pace. Yesterday we took the dogs for a walk, and took down the last of our Christmas lights outside. It was great to be outside without gloves and boots for a change. My car is among the worst cars on the road today in bad weather, so we're looking to replace it. I figure as soon as we do -- the snow will stop indefinitely. That's usually the way it works! (Ha!)
Erin has her first official school dance this coming Friday evening. She's looking forward to that. As for me -- it just makes me feel OLD! (Old -- but grateful!) Life is good.
The kids are keeping busy, as usual. Katie is preparing for her honors band performance at the end of this month, and Jessica is getting all of her ducks in a row for grad school. We have great, hard working kids, and I am so proud of all of them!
Thanks for checking on Erin. Please join us as we pray for other FA children who are in the midst of transplant, or are just on the other side and can finally begin to take a deep breath! Remember Samantha, Alicia, Dylan, Dianna, and please remember our buddy Nicholas. I can assure you that every single prayer is GREATLY appreciated by these children and their families.
Take care, and Happy Valentine's Day to all!
- Barb, Kevin, Jessica, Katie & Erin
Wednesday, December 31, 2008 1:34 PM CST
Happy New Year to all our friends! We hope that everyone is enjoying a blessed, healthy holiday season.
Our Christmas was wonderful! Too many commitments, too much food, too many trips to the mall and too much money spent -- but very little stress over Erin's health. We are truly, truly blessed!
In spite of all the negative things that went on in our world in 2008, it was a good year for us. Erin is thriving. We added a new puppy to the family (Zoey) in September (Erin's birthday present). She keeps us all busy -- but she's just about the cutest thing I've ever seen. She is the most mischevious puppy you can imagine -- and we're not experiencing much success in the "discipline" department because it's impossible to look her in the face and remain mad at her for any length of time. And trust me when I tell you that Zoey knows EXACTLY what she's doing. She probably sits around with her other puppy friends at night and tells them what a bunch of gullible schmucks we are. Actually, our other dog, Sadie, does a pretty good job of keeping Zoey in check, so I think it's working out well.
A couple of updates on Erin: she donated over 10 inches of her hair to the Locks of Love program on December 11th, and now she's sporting an adorable shoulder length cut. It's so cute, in fact, that I think she's planning on maintaining it. She also goes back to the orthodontist in early January to be evaluated for "Phase II" of her treatment.
Katie got her braces off on December 22nd -- and I don't think I've seen her smile as much in her entire life as I have in the last week and a half. She celebrated her Sweet 16th birthday on December 21st. I can't imagine where all those years have gone!
We are looking forward to the year 2009 with high hopes, great expectations, and prayers for a healthy year for everyone. Though I don't often sign guestbooks -- I still check on our many Caringbridge friends regularly, so even if you don't see my name in your guestbook, know that you remain in our thoughts and prayers.
Best wishes to all for a blessed, happy, healthy New Year!
Until next time...
- Barb, Kevin, Jessica, Katie and Erin
Tuesday, December 2, 2008 11:45 AM CST
Greetings friends and family! Hope everyone had a fabulous Thanksgiving. Ours was very nice.
Erin had her six month check-up at Cincinnat Children's on November 20th, and everything went very well. She handled the lab work and flu shot like a champ, and I was really proud of her. We saw Dr. Harris (her Hemoc doctor), and Dr. Rose (her Endocrine doctor). Dr. Rose had proposed a lot of lab work she wanted done on Erin -- but after conducting the physical exam, she cancelled most of the extra lab work because Erin's growth since her last appointment was so impressive. She remains perfectly aligned on the growth chart curve for a child her age. Her weight is excellent, and she's going to be tall. It was another great visit. And to top it all off, we got to see two of Erin's absolute favorite people at Children's (Vanessa and Carrie). I feel grateful every time I walk out of that hospital any more! Grateful for good test results, and brilliant doctors to guide us through this process.
Erin will be donating 10" of her hair to Locks of Love on December 11th. She originally planned to do it sometime in January (at her hair dresser's suggestion so Erin's hair would still be shoulder length after the big "cut") but Erin is ready now, so we've moved the appointment up. If I can manage it, I'll post a picture after her appointment. I am just so proud of her! Every strand of her hair is precious to me, because I know how hard she worked to "earn" it back after her transplant. I get a lump in my throat just thinking about her cutting it. I am really proud of her. She's a very "old" 12 year old, if you know what I mean.
Our house has been converted to "Christmas-Central" since Thanksgiving. The trees are up, and I have even wrapped a couple of packages. Here in Ohio, we've already enjoyed a couple of snowy days -- though none of it proved to be the sticking kind. I have to admit, the snow really does help to put you in the holiday spirit! I started to experience "Holiday Schedule Anxiety" recently (too many commitments, not enough time), and Kevin reminded me how blessed we are to have healthy children who are able to participate in these things. He is so right! Erin is participating in a program at church called Hearts & Hands where the kids use sign language to perform with music. The group was invited to participate in the Christmas Cantata at our church this coming weekend. It is really beautiful, and I can't wait to see them perform. They will also be doing a song at the Christmas eve service at our church. Katie was recently chosen to perform in the Land of Grant Honors Band playing the flute. She auditioned the week before Thanksgiving, and she was competing against High School kids from all across our county. As you might imagine, the flute is one of the most popular instruments, and there were many, many kids competing for seats in the flute section. I am in awe of her talent, and I cannot wait for the concert the honors band will perform early in 2009. Katie will be celebrating her "Sweet 16" birthday on December 21st.
Jessica is in the middle of her Senior year at Wilmington College. She is such an exceptional young lady, and I am THRILLED that Katie and Erin have her as a role model. She is in the process of preparing for grad school, so that is consuming a lot of her time and energy right now. She is an excellent student, and an all-around great person. We are all looking forward to spending some time with her during her winter break from school. Hopefully she will get a little time to relax before returning to the grind of college life.
That is the latest from our neck of the woods. We continue to pray for friends who are coping with FA. I am happy to read that many of our friends are doing well right now. God is so good!
Hope all our family and friends have a wonderful Christmas and a blessed new year.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, October 23, 2008 8:30 AM CDT
Happy Halloween! Just a quick update to let everyone know that we celebrated Erin's 12th birthday yesterday. (Actually, we've been celebrating it for several days now!!)
As I was driving to work yesterday morning -- after racing around the house, taking care of kids, dogs and a cat, emptying the dishwasher and making beds, scraping windshields, etc. -- I couldn't help but just smile and thank God for this crazy, hectic, NORMAL life!! Erin had a great birthday. She got a puppy ("Zoey") back in August that was her official birthday present, but we all know how the passage of time makes a gift in August almost not count in October. (Go figure!) We went to dinner with grandparents last weekend, and we had a nice family dinner last night complete with a couple of small surprises. Overall, it was a wonderful birthday, and I am just so thankful to have the opportunity to celebrate such a beautiful life!
We go back to Cincinnati Children's Hospital on November 20th for what should be a pretty quick check-up. How appropriate that our next appointment takes place right before Thanksgiving! Things like that are not lost on me anymore. Your prayers for good test results from that visit are very much appreciated!
We are following several friends who are soldiering through transplant as I type this, and we know, very well, how difficult it is. Please remember Samantha MccCarthy and Alicia Reed in your prayers. Both are getting close to the dates when they will hopefully be released to head back to their homes, and families who have missed them very much! I'm sure their Thanksgiving celebrations will take on a whole new meaning this year!
Please also keep Nicholas Boggs in your prayers, as he was just released from a brief hospital stay. Though I know hospital stays are traumatic and frightening for his family, I also know that for the nurses -- it surely is a treat to have such a sweet little guy to take care of. I am thankful that his stay was very brief, and that he appears to be feeling a lot better. I know his family appreciates every single prayer that is lifted up for him, so please say a special prayer for this very special little boy.
I will update again after our visit with Dr. Harris next month. As always, your prayers for Erin are very much appreciated.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, July 23, 2008 1:42 PM CDT
Greetings friends! Thank you for checking in on Erin.
We finally received the information packet from Cincinnati Children's that summarizes all of the test results from our three-year post-transplant check-up in May. Everything looks good. Erin has officially moved from the care of the "transplant" team, to the Fanconi Anemia Comprehensive Care team. I think that's pretty significant! Transplant is such an ENORMOUS hurdle in the FA race -- that to be told you have officially cleared it is a huge cause for celebration. To be honest, the switch hasn't actually affected us much. We still see the same doctor (Richard Harris), except now he is accompanied by an FA team associate rather than a transplant associate. Everyone we deal with at Children's has been great, and we are thankful to have access to such a fantastic group of professionals.
Erin will now be seen every six months in the FA Comprehensive Care Center. This will enable her doctors to monitor her more closely for the various types of cancer that can occur in older FA patients. I am completely in favor of more frequent check-ups. I want to do everything in our power to always remain one-step ahead in this battle.
I hope to post a new picture of Erin soon. Her hair is so long you would not believe it!! Her plan is to get it cut, and donate it to Locks of Love. This has been her plan for years -- and I have no doubt whatsoever that she will follow through with it. She would like her hair to be just about to her shoulders when the "cutting" is done, and I would guess she will need about 2 more inches of growth to satisfy the 10" requirement for Locks of Love. She is the neatest kid! She thinks like a grown up, but she's still such a sweet little "cuddler"! We are all so blessed to have her in our life. I am thankful beyond measure.
Katie is getting ready to start her sophomore year in High School. She has a very ambitious schedule of classes, and she is going to be traveling to France and Spain on a school trip at the end the school year. She has a lot of exciting things coming up. Erin will be entering Middle School (... you have no idea how difficult it was for me to type that!! It seems like she was in the first grade only a year ago!!). Anyway, it's a very exciting time for both of them, and Kevin and I are just enjoying the ride!
Erin is a social butterfly -- and our telephone never stops ringing. The really scary thing is that about half the time, the voice on the other end is a BOY! Yikes!! No matter. Kevin has been perfecting his scary "dad" face for a couple of years now, and he's ready.
I would ask you to keep a couple of very special FA friends in your prayers. Alicia and Samantha are in the early stages of their transplant journey at Children's. Lindsey is home from Minneapolis and recuperating from her transplant earlier this year. As always, please keep sweet Nicholas Boggs in your prayers.
Hope everyone enjoys the last of this year's lazy days of summer! Thank you for faithfully checking on Erin, and thank you for your prayers on her behalf.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, May 13, 2008 10:03 AM CDT
***** PLEASE READ *******
I just discovered that the National Marrow Donor Program is offering FREE donor registration kits during a Mother's day promotion (... it typically costs about $55 a person to become a member of the National Donor Marrow Registry). If you have ever even considered becoming a bone marrow donor -- NOW is the time to do it! The process for collecting cells is simple and pain free (no blood draws -- just a swab to the inside of your mouth! Totally painless!) PLEASE, PLEASE, PLEASE click on the link below and request the kit! You may be the "miracle" that a very sick child is desperately waiting for!
http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html
Day 1097
Wow! 1,097 days ago -- Erin's new life began, and though her "official" anniversary is May 11th, I think we celebrate a little bit every single day. It is a joy almost beyond description to just watch her grow and thrive. Our lives have settled back into a nice, comfortable routine -- but now, I don't take one minute of it for granted! It is a joy and a blessing to be Erin's mom, and we are so thankful for all of the doctors, nurses, family and friends who helped her to get where she is today.
I feel like we have failed miserably in thanking folks appropriately for all of their help and prayers during Erin's transplant and recovery. Over the last couple of years, I have struggled again and again to come up with suitable words of thanks -- but the truth of the matter is, there just aren't any! From the friends who prayed relentlessly for Erin's recovery, to the folks who helped to provide for our family's needs, both spiritual and financial, to Joyce -- who became Erin's primary care-giver when I returned to work. The list just goes on and on, and I want you to know that we appreciate every single kind thought, deed and prayer. Without all of you, we surely would not be where we are today.
We had our three-year appointment at Cincinnati Children's Hospital last Friday. It was a full day of appointments -- but it was actually a fun day! (Erin might not totally agree with that...) It is always nice to see those familiar faces that were so wonderful back in '05 and '06. Erin's lab results were excellent. We will have lab work done again in 6 months, but won't need to be seen again at Children's until May of '09.
The girls have about two weeks of school left. They are pretty pleased about that. The summer is shaping up to be a busy one as well. Between vacation, camps, soccer and swimming, I don't anticipate they will have much down time. If things go according to Katie's plan, she will be getting her drivers license (temps, anyway) sometime this summer. Sooo -- you have been forewarned! (he he he) I can't believe she is old enough to be driving!
As always, there are so many children who are still in need of prayer. Among them, please remember Nicholas Boggs, Lindsey Hathcock and Haley Milroy.
Thank you again for continuing to remember our family in your prayers, and thank you for continuing to check on Erin!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, March 10, 2008 10:33 AM CDT
Be careful what you wish for folks! I recall back in December or January wishing that we would get a big, robust snowfall that the kids could "go crazy" in. You know the type -- the kind that produces those huge, magical snowflakes that ultimately create a "kinder, softer" world outside your window...
Well, two weeks before Easter -- you'll never guess what we got! A blizzard in Ohio! Whoopee! It was actually kind of cool, at first. The snow was soo deep that you could barely walk through it -- much less sled on it. But it was magical to look at. A big snowfall seems to bring out the kid in all of us. We attempted to get out and play in it a couple of times with mixed results. The first time we ventured outside, the storm was still raging, and it was freezing and windy. The snow was soo deep that we were exhausted by the time we got to our designated sledding hill. When the kids jumped on their sleds (the disc type) to head down the hill, the sleds just sunk into the deep snow. It was part hilarious, and part disappointing!
We managed to get to church yesterday morning, and the roads were still covered in snow -- so you can imagine our surprise when we went out again late yesterday afternoon to do some shoveling, only to discover that the sun had come out, and the roads were beginning to clear all by themselves. This will go down in the record books as one of the most intense snow storms that completely disappeared within a day or so. I shutter to think how muddy it will be around here in the next week (we should have temperatures in the 40's and 50's most of the coming week). Like I said, ... be careful what you wish for!!
Erin continues to do very well. She tired easily while we were out in the snow on Saturday, which made me a little uneasy. But after I tought about it -- I was tired, too. It was like trying to walk in knee-deep wet sand. To add insult to injury, we were up and down the hills over and over trying to create a path for sledding. It was really quite exhausting. In addition to that -- it's sometimes hard to tell with Erin what is pure drama, and what is authentic. She's such a ham...
Her three-year transplant anniversary will be on May 11th. I have already contacted Cincinnati Children's Hospital to try to get all of the tests and doctor's appointments scheduled. Hopefully we will be able to do everything in one day, like last year. They offered to let us schedule everything in June after school is out -- which was tempting. But May 11th is a holiday in our household, and I decided to keep the appointments as close to her anniversary as possible. In addition to that, Erin has a number of things planned for the summer, beginning immediately after school ends, and I didn't want to schedule any appointments that might conflict with her other activities. It should work out just fine.
Well, that's the latest from our home. As always, thank you so much for checking in on Erin! Please keep a couple of our friends in your prayers right now -- Lindsey, who is undergoing transplant in Minneapolis as I type this, and Nicholas, who continues to struggle with bone marrow function. Both would be very appreciative of your prayers.
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Friday, February 8, 2008 9:28 AM CST
Greetings Caringbridge Friends! Just a quick update.
It's frosty in Ohio! We had some serious storms blow through Bethel earlier this week. The weather people are still trying to determine if it was a tornado, or if "straight line winds" are responsible for the damage. The wind was so powerful it sounded like our roof was going to blow off -- but fortunately we didn't experience any property damage. Our weather has been interesting lately, to say the least!! We go from unseasonably warm temperatures to wind chills below zero -- all in the space of a couple of days. Our biggest challenge lately is trying to figure out what to wear from one day to the next (capri's or snow boots??).
In spite of our annual flu shots -- the whole family has been "stricken" by some type of virus recently. We're all in varying stages of recovery, which is great. I still can't help but panic every time Erin coughs or runs a fever, but it's SO amazing to watch her whip these things when they come around. She is on an antibiotic for an ear infection right now -- but you'd never know it to look at her. She's going 90 miles an hour in every direction. I absolutely LOVE it!!
We have a little friend who could use your prayers right now. Lindsey (another FA patient) has begun the transplant journey in Minneapolis. The early days are tough -- so please keep her in your prayers (al/lindsey). Things are going well for Lindsey -- but reading her website really causes the memories of our time in Minneapolis to come rushing back. Erin will celebrate her three year anniversary on May 11th. Hard to believe...
Well, that's the latest from chilly Ohio. As always, thank you for checking on Erin! God bless.
Until next time --
Barb, Kevin, Jess, Katie & Erin
Wednesday, January 9, 2008 11:57 AM CST
Okay -- so enough of the "winter theme" on the website! Christmas is over and we are ready for spring!!
Yesterday the temperature in Ohio reached nearly 70 degrees. It was extraordinary while it lasted! I think it's going to be 38 degrees tomorrow. So much for our beautiful, balmy spring weather...
We are all doing well. The holidays were very nice. Too much of everything, except time! We did have a couple of scares just before Christmas. My parents were involved in a pretty serious automobile accident, and Kevin's dad had a bit of a health scare. To make long stories short -- everyone involved is doing well today, but we had a couple of intense weeks there!
On the home front, we had a frozen pipe burst in the girls upstairs bathroom. That created a little excitement at our house last week. (Nothing like waking up at 4am to water pouring through the light fixtures in the master bedroom closet and bathroom!) Anyway, damage overall was minimal, all things considered. We were fortunate that we were home at the time the pipe ruptured. Now, we're in clean up mode. It's coming along. It's funny how transplant has changed our perspective! Five years ago, water pouring from my ceiling would have been a crisis. Now, we regard it as a humorous story we will share with our grandchildren some day. Life is good!
We're planning our summer trip to the beach, and we can't wait. Our last beach vacation was the summer before Erin's diagnosis. At that time, I discovered I was not engineered by God to be a "beach" person (red hair, pale skin) -- however, the kids LOVE it! We're allowing them to take a friend this year, so it will be a fun, relaxing trip. This time, I'll take a beach umbrella and several good books. I am actually really looking forward to it.
That's the latest from our home. Best wishes to all our family and friends for a safe, HEALTHY new year!
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Wednesday, December 12, 2007 3:25 PM CST
Merry Christmas from our home to yours! Thank you for checking in on Erin.
Erin had her six month check-up at Cincinnati Children's Hospital just before Thanksgiving. Things continue to look great. All of her counts are in the normal range, and we have officially been placed on a "once-a-year" check-up schedule. Erin will actually go back in May because that is the anniversary month of her transplant. At that time, they will do a very thorough work-up (appointments with numerous specialists; annual x-rays and lots of lab work), and then we'll be finished for a year. Going to Children's Hospital anymore is kind of a bitter/sweet thing. Now, we have nearly as many good memories of the place as we have difficult ones. Life has a way of balancing out over time.
This has been a surprisingly calm Christmas season so far. I can't put my finger on it exactly -- but there is just less stress this year. So far, we've attended holiday programs at church and school, we've decorated, shopped, wrapped and baked. We've even had a little relaxation time at home. I'm not sure what we're doing differently this year -- but whatever it is, I SURE hope we can repeat it in years to come. Truthfully, I don't know that we're actually doing anything differently than in previous years. I think we've just learned to enjoy the important stuff, and not worry about the rest.
To all of our friends who continue to check in on us and pray for Erin -- we wish you a safe, happy, stress-free holiday -- and a very HEALTHY New Year! Thanks for hanging in there with us! We appreciate you more than we can say.
Until next time...
- Barb, Kevin, Jessica, Katie and Erin
Tuesday, November 6, 2007 8:50 AM CST
Greetings! Thank you for checking in on Erin. Everything is going well at the McKee homestead, and we are thankful for that!
Erin's 11th birthday was on October 22nd. We had a family birthday party, and are planning a "friends" birthday party the weekend after next. There is so much going on now that the holidays are approaching. It's tough to get these things planned! I'm desperately trying to find something we can do that will NOT involve having 9 squealing girls sleep over... (Ha!) Actually, we'll take the 9 squealing girls. If there is one thing I've learned over the last several years it's this: birthdays are to be CELEBRATED!
Halloween was lots of fun this year. The weather was warm and pleasant, and in a small town like Bethel, you see just about everyone you know on Trick-or-Treat night. We dressed Erin and Sadie up, and away we went. It was a fun evening. Not sure how many more years Erin will want to dress up and do the whole "beggars night" thing, so we embraced it this year. I can't help but remember back to Halloween in 2005, right after Erin's transplant. We had been home from Minnesota about 2 months, and during that time, Erin barely left the house except to go to the hospital for visits. We dressed her up as a nurse (complete with a mask! How clever were we??) and took her out in "public" for the first time since returning home. We went to our church, where they do something called "trunk or treat" (church members who live in the more rural parts of town bring their candy in and hand it out from their cars in the church parking lot). We made a trip through the parking lot, and everybody made a huge fuss over Erin. Though I know she was thrilled to be out and about -- she asked us if she could go home as soon as we finished the loop around the parking lot. The very next night, Kevin thought she felt a bit warm and took her temperature. It was nearly 104 degrees! We ended up taking her to the hospital, and remained in-patient until Thanksgiving. What a difference two years makes!
Please keep Jessica in your prayers. Things are crazy-busy for her at school right now, and she has a lot going on. I know she would appreciate the extra prayers!
Please also remember all of our caringbridge friends as we approach the holiday season. The holidays can be a particularly tough time of year, as you can imagine.
Thanks for your prayers on Erin's behalf, and for being so faithful about checking on us.
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Thursday, October 4, 2007 9:39 AM CDT
Happy Fall! Thanks for continuing to check on our little stinker. We are experiencing unseasonably warm weather in Ohio right now. It feels strange to see the leaves changing color and falling while you're laying on a beach towel in your swimsuit... (just kidding!) It's going to be 91 degrees here today. I'm ready for a move north (... WAY north!!)
Homecoming was great! The weather was hot, but clear and sunny. I think both of the girls had a great time, in spite of a defeat on the football field. Kevin and I worked in the concession stand during the game, so we missed seeing most of the game (... mercifully!). Overall, it was a fun evening. Katie looked absolutely stunning for the dance on Saturday! I guess there is no denying that my "baby" has grown up. She had several friends over to the house before the dance for some food and fun. It was a nice evening.
Erin goes back to Cincinnati Children's for her 6 month check-up on November 15th. Visits are different now than they used to be. At one time, I regarded Children's Hospital as one of the scariest places on the face of the earth, and now, strangely, I find the hospital very comforting. I can still vividly recall all of the doctors and nurses that took such good care of Erin during our frequent stays in 2005 and 2006. It's nice to see those familiar faces -- but with each passing visit, we see more and more new faces. It feels funny to be "out of the loop" now -- but it's a blessing, for sure! We expect that if everything goes well next month, Erin will be switched to a once-a-year follow-up schedule. That will be REALLY strange -- but also an answer to many, many prayers. God is good...
Soccer is wrapping up, but it's been an outstanding season, and an outstanding experience for Erin. She seems to be keeping up with her teammates just fine, and she's actually a really competitive player. We've enjoyed every minute of soccer this year.
Erin will turn 11 on October 22nd. You cannot imagine how absolutely GREAT it feels to be able to say that. Eleven was a dream 4 years ago. I still get goosebumps sometimes when I look at her. Just seeing her going about her precious little life is a blessing beyond anything I can describe. Life is so, so good, and we are so, so thankful!
Please keep these children in your prayers: va/nicholas.e.boggs, al/lindsey, wi/tomneddo, mn/whitney, ia/terrell, to name just a few. I check so many websites each day that I'm losing track! Also keep Erin's Uncle Kelly in your prayers as he continues to recover from his recent surgery. His recovery has been miraculous, as well, so we are thankful for that (carepages: mckeeka). So many in need of prayer! Thank you for your prayers for these.
Until next time...
- Barb, Kevin, Jess, Katie and Erin
Tuesday, September 18, 2007 9:35 AM CDT
Greetings and thank you for checking on Erin. Our schedule has officially moved into the "crazy-busy" range with all of the fall activities going on. This week, we have multiple commitments every night as we prepare for "Homecoming" this Friday. Soccer is taking up a lot of Erin's time, and Katie is busy with the band at school, and with preparations for her first Homecoming dance as a high schooler.
We did have a little excitement yesterday morning. For those of you who have never been to our home, we live in a pretty rural area. Much of Kevin's commute to work entails driving through farmland, and at this time of year, deer are EVERYWHERE! Yesterday morning, Kevin hit a deer on his way to work. Fortunately, he drives a pretty big truck, and he wasn't hurt, but the truck took a beating. Thankfully, trucks can be fixed. We were disappointed because Kevin was going to use the truck to pull Erin's soccer team's float in the homecoming parade on Friday. It's doubtful any of our friend's trucks are available, because I'm not exaggerating when I tell you that nearly every child in our school district is in the parade in some form or fashion (on a sports team, in a scout troop, on a cheerleading squad, etc.) and just about every truck in our area has been put into service in the parade. Erin's soccer coach was able to get a truck from a local Chevy dealership to use to pull the float, so Kevin will drive this lovely new truck instead. (I hope he doesn't get any ideas... ha!) So we're back in business. Homecoming is a great time in our community. The parade is a real "event" in Bethel. Thank goodness for all those devoted grandparents who line the parade route to snap pictures of their grandkids as they ride by! It's such a fun time. Katie will be participating in the marching band in the parade. She hates the uniform -- but loves the music. Band has been a good experience for her this year. The marching band program is really just getting started, so I'm really proud of her dedication to it. She's such a sweetheart!
The weather is going to warm up again this coming week. That will probably be nice for the parade and the game. Even though I love those crisp autumn days, I think it would be smart to embrace these last days of summer weather, because in no time at all, we'll be dealing with winter coats and frost on our windshields.
That's the latest from our home. Please keep our friends who are still in treatment, or still recovering in your prayers. It is appreciated more than you will ever know!
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Wednesday, September 12, 2007 8:10 AM CDT
Day: 2 years, 4 months
Not much new to report from the McKee household -- but Erin asked me to update her website because she has been able to check it from school, and some of her friends have been checking it also! I think that's so cool! If you are able to leave her a message, please do! I know it would thrill her.
Fall has officially arrived in Ohio. Because of our hot, dry summer, the trees have gone dormant prematurely, so they are already changing color, or in most cases, just dropping their leaves. We typically don't see this until mid-to-late October. The temperature this morning was 49 degrees. Not only did it look like fall -- but it felt like fall, too! I am not complaining because I was just about fed up with the 90 degree days we've been having for the last couple of months. We're heading into my favorite season of the year. This drought has just prolonged fall a bit. You won't catch me complaining...
As I mentioned in my previous journal entry, Erin is back to playing soccer, big-time! She loves it, loves it, loves it - - and we couldn't be more pleased. The exercise is good for her, and she's on a team of really great girls. I don't even mind sitting at the soccer fields during practice and games because the other moms and dads are so fun to be around! It's just a neat group of people. Her team lost their first two games -- but they were very competitive. The team had only practiced twice before their first game because the weather had been so hot, it just wasn't safe for the girls to get out and run up and down a soccer field. They won both of their games last weekend -- convincingly. It was awesome, and Erin did GREAT! Now that we're back, I realize how much I have missed this. It is so much fun!
Erin is complaining that we need a new picture posted on her webpage -- and I agree. I am not technologically savvy enough to do this myself. (Are you reading this daddy?) Those of you who have not seen her in a while will be amazed by how she has changed. Her hair is long and her braces have really changed her appearance. She's prettier than ever! I have purchased all the supplies to do a scrapbook of her journey through transplant. The pictures tell the story. I would love to put something current up so you can see how healthy she looks! (Thank you, thank you, thank you Lord!)
That's really the latest from our home-front. Now, if you would indulge me for a moment -- I'm going to get on my "soap box"! Over the last several years, I have come to know many (emphasis on MANY) children who have been fighting for their lives against the cancer beast. It seems like every couple of days I learn of another child who has been diagnosed with some form of this incredibly cruel disease. And many of those precious children have lost their battle. Each time I read about a child earning their angel wings, it absolutely crushes me. These kids are brave beyond anything you can imagine. They endure painful treatments because it's their only hope for a future ... and they rarely complain. Their compassion for others humbles me. They worry about friends they have made who are fighting their own battles with diseases. They worry about their parents, and their siblings. It's just unbelievable. Each time one of them passes, they take a little piece of my heart with them. I understand that Congress has cut funding to pediatric cancer research. If I am not mistaken, pediatric cancer research makes up less than 2 percent of the total budget for cancer research in our nation. These precious children are our FUTURE! Presidential candidates are raising millions and millions of dollars in their bid for the White House, while researchers are pinching every penny they have to make the money go as far as it possibly can. Parents are DESPERATE for help in this battle. Our voices are not being heard, and we are paying the price with our children's lives. I am outraged that in a nation as progressive as ours, our legislators do not recognize the need to address this problem. Doctors are beating their heads against walls. They are the ones who have to deliver devastating news to desperate parents, and then watch these kids decline after absolutely miserable long-shot treatments that did not work. It's just wrong!
If you are inclined to -- write your congressman and ask him or her to vote for change. Check out the website: www.loneliestroad.org. Several fathers of children with neuroblastoma are riding across the country trying to raise awareness and funds for the battle against this disease. I have followed one little girl for about a year now. Her father is one of the cyclists. Sidney relapsed several months ago, and this family is fighting hard to find viable treatment options for her. It really tugs at your heart strings.
Thank you so much for indulging me! I am so thankful for the success we have experienced in Erin's treatment and recovery. We are so fortunate, and not a day goes by that I don't think about that. I just wish I could do more for the families who are still on the front-lines in this battle. It's a terrible place to be.
Until next time...
- Barb, Kevin, Jess, Katie and Erin
Friday, August 24, 2007 1:57 PM CDT
Day - 2 years & 3 months...
Just a quick update to let you know that Erin returned to school yesterday. She's off and running!! We went to Open House at her school last Tuesday night, only to find out that her teacher for this year (one that Erin knows from last year and was THRILLED to get...) had gone into labor that morning, and will be out until sometime in the Fall. No matter. She is still thrilled to be back in school! I reminded her this morning that she has, "... one day down, and only 269 to go!" She didn't think that was funny.
Though it is almost "old news" by now -- we were horrified by the I-35W bridge collapse in Minnesota a month ago. We were actually in Gatlinburg when it happened, and both Kevin and I sat in utter shock and disbelief as we watched the news coverage from our hotel. If you needed to get anywhere from the hospital or the Ronald McDonald House -- you traveled on I-35W to get there. I got goosebumps when I saw the news. My experience was that at most any time of the day, any day of the week, you could expect to experience bumper-to-bumper traffice on I-35W. The fact that more lives were not lost is nothing short of a miracle, although I know that is of little comfort to the ones who lost family members. It's just tragic.
We did not make it to the Annual FA Family Meeting/Camp this summer, though I must say that every year, my desire to be there gets stronger and stronger. Immediately after Erin's diagnosis, I simply could not face it. But being post-transplant as we are, I often think that perhaps Erin's story would be a bright spot to share with families who are newly diagnosed, or facing transplant soon. I have said many times, the outlook has never been better for children with FA, and if we can help a family through the tough times, we would very much like to do it. I think it would be theraputic and wonderful for our entire family to spend a week with other families who understand exactly what it's like to cope with this illness in the family. I am certain there are times during the week when your heart just aches -- but I also believe there would be many more times filled with laughter, fellowship and hope! I hope we can go next year.
Erin is back to playing soccer after a 4-year hiatus. So far, she has enjoyed every part of it -- from shopping for new soccer "gear," to practicing in 95 degree weather. Her first game is tomorrow afternoon. She reminded me recently that she submitted the name that her team ultimately chose when they first came together back in the first grade (the "Fireballs"). She was so thrilled to find out that they have kept that name through the years! With a few exceptions, many of the girls on the team are the same from back in those early days. I'm really excited about her game tomorrow. When Erin played before, half the fun was watching the girl's shoes go flying through the air each time they tried to kick the ball! They were all so tiny back then. I'm sure it's much different now.
Katie is now officially a Freshman. One day down, ... (well, you know). Her first day went great. So far, so good!
That's the latest from our household. I continue to check websites for all of our friends, and I am absolutely thrilled and amazed to see these courageous kids getting back to a somewhat "normal" life. When I think about what each one of them has been through, I am awestruck. They are all absolute miracle kids. Please continue to pray for Tom Neddo as he recovers from surgery to repair bone damage in his leg. Also continue to pray for Whitney as she deals with pain from bone damage (what a trooper that kid is!), and for Nicholas Boggs as he recovers from a nasty infection that sent him to the hospital during FA camp last week. He is one brave, precious little fella! Please also remember the other kids in various stages of recovery, or treatment (Terrell, Sidney Sims) and for those parents with empty arms today.
I will update again soon. As always, thanks for checking on us!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, July 12, 2007 8:48 AM CDT
Just a quick update to let you know that all of our vaccinations are done, and we are relaxing and enjoying our summer!
Erin ended up getting FIVE shots at Children's Hospital on June 29th. I was dreading the appointment -- but as I sat in the Hemotology/Oncology waiting room at Children's, I realized that vaccinations are a very simple appointment relative to what other children were there for that day. The shots were no fun -- but they were over in a flash, the nurses were wonderful (as usual), and we followed the visit up with a trip to Don Pablo's for lunch (Erin's favorite), and then a quick dash to Toys-R-Us (much to Kevin's dismay). All in all, it was a great visit, and we're officially DONE with vaccinations! Now it's on to normal summer stuff. We're heading to Gatlinburg at the end of July for a couple days of vacation.
Katie is finished with her "Summer PE" class. They ended up bringing a Sergeant from the U.S. Marines in several days to put the students through military exercises. Katie said it was BRUTAL, and she feels somewhat betrayed by the Guidance Counselor who told her the class would be "fun". Every afternoon we fought over who got to pick her up from the class because it was so hilarious to listen to her groan about her aches and pains and complain about the torture he put them through! We all got a pretty good chuckle out of it. Now, the class is done and she's starting her freshman year of high school with some credit already under her belt. Not too bad!
So, we're all doing well. Summer is going great. We're finally taking those leisurely walks in the evenings that I dreamed about two years ago! I just can't get over how fabulous Erin is doing. We are breathing a little easier these days.
The girls have been making frequent trips to the pool, and spending some quality time with their grandparents. Life is wonderful!
That's the latest from our household. Things should be pretty quiet until school starts again next month. Erin is planning on playing soccer this year. That should be fun!
As always, we appreciate your prayers for Erin and our family, and also for the other children we have met along the way who are in various stages of treatment or recovery.
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Tuesday, June 12, 2007 12:05 AM CDT
Thanks so much for checking on Erin! Summer has finally arrived in Ohio, and we are enjoying it very much. School is out, and the girls are lovin it!
Erin just returned from her first post-transplant week of church camp (away from home). Now, to most people, this would have been cause for celebration as Erin has fully recovered from her transplant and is healthy and strong and able to go to camp. But for me, the week amounted to about 120 hours of TORTURE! No kidding. I was a wreck (just ask Kevin...). The house was too quiet, and life was just painfully simple.
By mid-week, I was totally perplexed. I should have been catching up on my reading or any of the host of other projects I haven't had the time (or the peace and quiet) for. It finally dawned on me that a house without Erin in it has been my greatest fear since her diagnosis 4 years ago. What a JOY that Erin got to go to camp this summer -- and what a JOY that she's home again! If I haven't said it often enough -- life is very good -- and I am very thankful!
Katie continues to thrive. She is getting ready to start "summer P.E." (as she calls it). When we met with Katie's high school counselor to prepare her Freshman schedule, she decided she wanted to take Freshman Phys Ed in summer school (an 8-day program) so that she could free up time in her schedule for more "desirable" elective classes next fall. The counselor said summer PE class is actually a whole lot more fun than anything they do during the school year, so it seemed like a win/win proposition. We have all been warned not to refer to this as "Summer School" as Katie said it sounds like she flunked P.E. class! She was thrilled to find out yesterday that one of her friends will be taking the class, too, so I think she is feeling a bit better about her decision to attend "summer P.E.".
Erin's next big doctor visit is scheduled to take place just before Thanksgiving. How cool is that? Thanksgiving is a long way off. We are blessed, blessed, blessed! However -- she is also due to get her next round of vaccinations (a total of 6 shots!) in the next couple of weeks. If you ask her -- she probably doesn't feel very "blessed, blessed, blessed" right now! (Ha!) We will probably go to Cincinnati Children's for the vaccinations because they can combine a couple of the shots so there will be fewer pokes. I must admit -- I'll be happy to have that appointment out of the way.
Orthodontia is coming along nicely. The girls smiles are beautiful, and Kevin and I are officially broke. (Ha!) I think it will be worth it in the long run...
That's the latest from sunny Ohio! As always, your prayers are greatly appreciated. Please keep Ricki in your prayers as she is going through a tough time, and our friend Becky from church as she undergoes additional treatment.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, May 10, 2007 3:00 PM CDT
Day +729
2 years and counting...
Tomorrow will mark the 2-year anniversary of Erin's bone marrow transplant. The memories of that time are beginning to get a wee bit hazy -- and I hate that. Part of me absolutely never wants to forget that time, because it was such a powerful, humbling, overwhelming, miraculous time for our family. And another part of me never wants to revisit those memories again because they were absolutely terrifying at times. Over the past two years, on occasion I have gone back and re-read some of our journal entries, and the feelings and memories come rushing back with such force that it still surprises me. I am thankful beyond words for the success of Erin's transplant and for her amazing recovery to date.
We had appointments at Cincinnati Children's Hospital today to meet with her doctors and review all of her test results from April. To summarize -- everything looks GREAT. She remains 100% donor. Her new little immune system is humming along, and Kevin and I simply could not be happier. Our next appointment will be in 6 months. If everything looks good at that appointment, we will switch to annual check-ups.
Four years ago, it was difficult for me to even ponder six months into the future because I just didn't know what the future held. Today, we are filled with hope and we are eternally thankful to everyone who has shared this journey with us. It's not over yet -- we know that. But we are thankful for the smooth waters we find ourselves sailing in right now.
School will wrap up on May 31st. As you can imagine, the girls are looking forward to summer. Erin is planning on spending lots of time at the pool this year (she wasn't able to swim last summer due to her central line...). We're also hoping to do some camping and make some progress working in the yard. It's all good.
As always, thanks for faithfully checking in on Erin, and thank you for your faithful prayers on her behalf. I am absolutely convinced that those prayers have made all the difference.
Live simply,
Love generously,
Care deeply,
Speak kindly,
and leave the rest to God.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, March 15, 2007 3:27 PM CDT
Okay -- sorry for the delay in updating! There is just so much to write that I'm having a hard time organizing my thoughts!
All I can say is this ... WHAT A TRIP! It was perfect in nearly every way imaginable. The weather - perfect; the lines at Disney and the other theme parks -- what lines??, the cruise - absolutely unbelievable! The service was fabulous, the weather was beautiful, the food was outstanding. They even have a Wish Coordinator on each Disney cruise ship, and every time we left our state room, we returned to some sort of surprise waiting for Erin from the Wish Coordinator (Joy). Talk about spoiled! There were about 7 "Wish" children on our cruise, and the group got a private invitation to meet "Captain Mickey" at a reception one afternoon. Anyone that has visited the Disney theme parks or cruised on a Disney ship knows that if you want to meet Mickey (or any one of the Disney characters), you should be prepared to spend a significant amount of time waiting in line. But not us! We got a private audience with the big guy himself! Truthfully, the get together with the other wish kids was touching and heartbreaking, all rolled up into one. Although Erin is on the high end of the age-spectrum for appreciating the Disney characters -- the younger ones were absolutely precious, and I know I had to turn my head a couple of times so that nobody would see my crying. The kids were so thrilled, and believe it or not -- "Mickey" somehow conveyed compassion and love for these kids through a 2" thick mask. He was so tender and sweet with each child. It also reminded me how very, very fortunate we are. As I watched one daddy carry his little girl from her wheelchair for a picture with Mickey -- it dawned on me, yet again, that we are blessed beyond anything we deserve.
I guess I would sum up our trip as follows: all Erin had to do was ask, and her every wish was fulfilled! I will forever be a contributor to the Children's Wish Foundation!! They did an extraordinary job, and they absolutely made Erin feel like a princess. The trip was beyond anything I could have imagined. I swear -- on our trip back to our hotel after our day at the Magic Kingdom, I saw a "mickey" shaped cloud in the otherwise clear blue sky! It was pure magic. We have lots of pictures, and Kevin has promised me he will download some new ones. (I think we're due!!)
Now -- back to reality. Kevin and Katie had a cold while we were on our trip, and I ended up with a cold as soon as we got home. Erin has been home from school for the last two days with an ear infection and a fever. She seems to be feeling better today -- so I'm hopeful we've turned the corner. I guess it all comes with the territory when you have the immune system of a toddler! I have to admit that I'll feel much better when this fever goes away. She's a lot perkier today than yesterday, so I'll take that as a good sign.
As always, thanks so much for checking on Erin -- and check back again soon because we will be posting some pictures of the trip!
Please keep all of the FA kids in your prayers tonight. Also keep Matty in your prayers. He's a little boy I've been following via his website (visit: Matty) who has been battling a rare form of cancer for several years, and his parents have been instructed to contact hospice. I cannot imagine...
Until next time...
- Kevin, Barb, Jess, Katie & Princess Erin :)
Friday, February 16, 2007 8:03 AM CST
Greetings, and thanks for checking on Erin! I just thought I would try to squeeze an update in before we leave for our trip on the 28th. Not much new to report from a medical perspective, except that Erin had her first orthodontic appointment yesterday. The poor kid has been through so much already that orthodontics just seems to add insult to injury! But -- progress is progress, and I'm THRILLED that Erin is healthy today and able to start orthodontics. Another milestone achieved! Whoopee!
Speaking of our trip -- we're getting pretty excited about it! It's been ages since we've taken a real vacation. Now that I think about it, our last genuine vacation took place just before Erin's diagnosis in 2003. We are sooo READY! Every night at bedtime, Erin will do the official "countdown" till our departure. It is sweet to see her so excited about the trip. Katie's excited too -- but I think her excitement stems more from missing a week of school than anything else! (Ah ... teenagers!) It's all good. In spite of the fact that these trips are designed to be pretty carefree for the family, I'm still a bit stressed about getting everything together for a week away. It's hard to know exactly the right combination of clothes to take when you're leaving an area where the wind-chill is in the negative numbers, heading to a more tropical climate. Just looking at my swimsuit right now makes me nauseous (... for a number of reasons). Shorts and short sleeved shirts are almost beyond my comprehension. I guess the solution is obvious -- we'll just pack 7 days worth of everything. Problem solved.
So, ... that's the latest. We were snowed in on Valentine's Day. Ironic. At Christmas, when we were really hoping for the snow, we had temperatures in the 50's and 60's. Now, we're ready for Easter eggs and spring flowers and we're getting freezing rain and sub-zero wind chills. Mother nature clearly has a sense of humor! The good news is that the groundhog saw his shadow, so spring is on it's way for SURE. (Ha! The groundhog is just about as accurate as our weathermen!)
I guess that's it from our end. I continue to check on our friends through their websites, and pray daily for good news. Hope everyone is keeping warm during all the arctic weather in the north.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, January 22, 2007 1:36 PM CST
Greetings, and Happy New Year!
Erin had a three month check-up at Cincinnati Children's Hospital last week. Our only anxious moment came when it was time for Erin's labs to be drawn (...no surprises there). We had a nurse we had never had before, so I was REALLY hoping that she would be a whiz-bang in the lab department ... and she was. (Whew!) The whole thing was over in about 2 1/2 minutes.
To give you an idea of just how far we have come, I'm going to list Erin's labs from February 1, 2005 versus the labs we had drawn last week. The 2/1/05 labs are the last set we recorded in the table we were keeping prior to Erin's transplant.
Feb. 1, 2005:
WBC: 2.7
HgB: 7.0
Platelets: 14,000
ANC: 460
Jan. 18, 2007:
WBC: 12.7
HgB: 14.1
Platelets: 238,000
ANC: 4,570
When we arrived in Minneapolis in April of 2005, they set Erin's hemoglobin threshhold at 8.0 (i.e., if her hemoglobin went below 8.0, she would immediately be transfused). As I looked back over the table we were maintaining -- Erin's hemoglobin had been below 8.0 for nearly 6 months prior to her transplant. Erin was also receiving shots 3 times each week to keep her ANC level above 1,000 (this is her Absolute Neutrophil Count -- the indicator of her bodies ability to fight off viruses and other infections). Even with the shots, you can see that it was an uphill battle trying to keep that count in the safe range.
So, ... everything looks great today. Erin will celebrate her 2-year transplant anniversary on May 11th. Our plan is to have Erin's work-up done in Cincinnati this year. We are in the process of trying to get everything coordinated right now.
Erin's Make A Wish trip is coming along very nicely. We're scheduled to head to sunny (...we hope!) Florida at the end of February. We are all anxious for some tropical weather!
That's the latest from this end. Thanks for your prayers, and for continuing to check on our little stinker. I swear that I get a lump in my throat everytime I look at Erin. I know we are blessed beyond anything we deserve, and I am so very, very thankful.
Hope your new year is off to a great start! I will update Erin's page after our trip next month.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, December 28, 2006 2:10 PM CST
Greetings Friends & Family! Happy Holidays! Hope everyone enjoyed a HEALTHY, blessed Christmas.
Ours was incredibly normal. How absolutely great is that? No trips to the hospital, no clinic visits. Just band concerts, children's programs at church, Christmas parties at school, and get togethers with family and friends. Make no mistake -- there was the unavoidable stress that goes along with the holidays (crazy schedules, too much to buy, too much to eat, etc., etc., etc.) but at the end of the day, we were all home together, healthy, safe, well-fed and exhausted. Life is just incredibly good!
Today, Kevin and I will celebrate our 15 year wedding anniversary. We spent the day together yesterday just running errands and, ... well, eating. (Ha!) What an amazing 15 years it has been! It has truly been a roller-coaster ride filled with laughter (lots of that!) and tears (lots of those, too) -- but mostly it's just been an incredible journey with my very best friend. I love you Kevin! There is no denying that you probably deserve better, but as you have become famous for telling folks, you've resigned yourself to playing the cards you've been dealt. What a good sport you are! (HA!) Seriously, though, I am so thankful that God found it in his heart to bring us together. (Apparently, he has a sense of humor, too.)
2007 is shaping up to be a really exciting year for our family. We have Erin's Make-A-Wish trip coming up at the end of February. That should be FUN! Katie will be performing in the Land of Grant Honors Band in January. That was a great experience for her last year, and I know she's really looking forward to it again. We are praying extra-hard for a very healthy new year for Erin, our family, and all of our friends.
On a sad note, we had to have our beloved labrador retriever, Cocoa, put to sleep the week before Christmas. You think after you have gone through an experience like we have with Erin, it would not have been such an emotional thing -- but we were all devastated. I guess that's a powerful testimonial to how special she was to us. Sadie (Katie's new puppy) has managed to take some of the sting away, but there is still a very big, very empty spot in our home and in our hearts. Those of you with beloved pets will understand. I'm just really thankful that we got to have her as a member of our family for 7 years. She was such a sweetheart.
I guess that's it for now. I am thinking that, as the new year approaches, perhaps this might be an appropriate time to step back from the website for a while, and only update when we have something significant to report (i.e., marvelous test results or incredibly good annual visit reports). I am afraid that people are getting a bit bored reading, "Erin's great.... Erin's great, ... Erin's great" (even though I NEVER get tired of typing that!!) We'll see if I go through "Caringbridge withdrawal" after the first of the year!
Take care. Happy holidays, and best wishes for a blessed, prosperous, HEALTHY New Year!
Until next time...
- Barb, Kevin, Jess, Katie and our little Miracle
Tuesday, December 12, 2006 1:31 PM CST
Holiday greetings! Thanks for checking on Erin today. Although I don't have anything new to report on Erin this week, I wanted to wish all of our family and friends a very Merry Christmas! I should probably knock-on-wood before I say this, ... but it looks like I might actually get a few Christmas cards in the mail this year (...Whoopee! It's been about 3 years since I've mailed Christmas cards!!) That's a sure-fire sign that things are going well in the McKee household. Don't get me wrong -- things have been crazy, but it's a good kind of crazy.
Katie and Erin both have Christmas programs coming up this week at school, and Erin has a Christmas program at church this coming weekend. That should be fun. Katie also found out yesterday that she was selected, again, to perform in the Land of Grant Honors Band next month. She had to audition for the band, and was selected from a TON of middle school musicians. It's really quite an accomplishment for a young lady who has only been playing the flute for about 2 years now. (Where she gets her talent, I'll never know! I sure can't take credit for it!!)
We have a new member in the family who is keeping us all on our toes! Katie received a Shih Tzu puppy for her birthday three weeks ago. It's funny -- you just don't appreciate the peace and tranquility that you have until it's ripped away from you... (HA!) Actually, the puppy (Sadie) is just darling and the girls are having a ball with her. On the other hand, our chocolate lab, Cocoa, (also a sweetheart) has been very sick. It's tough to watch something so sweet go through such a difficult time. The vet said he thinks she has pneumonia, and possibly a form of canine influenza. We won't know for sure for another couple of days. In the meantime, we're just taking things one day at a time hoping that she'll start to turn the corner with this thing. I'm spending my evenings sitting next to her in the garage petting her and giving her a pep talk. I've taken her temperature so many times recently that she WILL NOT turn her back to me under any circumstances. That, at least, shows me she still has a little fight left in her. Bless her heart!
Well, that's the latest. We're just gearing up for Christmas, and counting our blessings. Please keep my cousin's daughter (Brandi) in your prayers over the next couple of weeks. They are heading to Cincinnati later this week so that Brandi can undergo surgery at Cincinnati Children's Hospital early next week. If everything goes as planned, they will be released with BARELY enough time to get back home to Florida for Christmas! (And we think WE have stress...)
Best wishes to all for a healthy, happy holiday!
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Tuesday, November 28, 2006 12:46 AM CST
Greetings! Hope everyone had an "excepular" (Katie's word) Thanksgiving. Ours was nice. A loving family, great food and fellowship. What more could you ask for? A good day. I say "good" as opposed to "outstanding" because we returned home Thursday night to a message from a dear friend telling us that another precious little girl we met during our time in Minneapolis had passed away. (Three steps forward, ... two steps back...). Our whole family sat around the computer screen with tears streaming down our faces as we read the update on Sidney's webpage Thanksgiving night.
I sometimes try to think back to our "life" before Erin's diagnosis -- when we were still naive and automatically assumed that all children would have the opportunity to grow up to be parents and grandparents themselves. How much easier life was then! Now, there is great joy in our lives and we appreciate even the little things SO much more -- but there is a deep, profound saddness that we can never seem to completely shake. I never dreamed that on Thanksgiving day, 2006, we would be grieving the loss of a precious, brave little girl from North Carolina with a smile that could just take your breath away. Sometimes, life is just so unfair. I have spent a lot of time since last Thursday trying to find the message that God would have us take away from this situation. I have come to the conclusion that this is one of those things that we are just not meant to understand until we meet our creator face-to-face. Praise God that we WILL meet him face-to-face one day soon, and Sidney will be waiting for us when we get there!
Erin went back to Cincinnati Children's for her "every-other-month" appointment the week before Thanksgiving. All of her counts were in the normal range, and it was a light-hearted, pleasant visit. We had a room full of medical folks (Dr. Harris, Michelle (Erin's PA), two other medical folks "in-training", and Carrie -- our favorite Social Worker at Cincinnati Children's) and Kevin, Erin and I. There was a lot of joking and kidding going on during the visit. It is so nice to experience visits like this! I remember not so long ago when I would leave the hospital sick to my stomach with worry, and with a pounding headache. This time, it seemed like the doctors deliberately lingered in our room. I suspect it's because behind each closed examination room door, there is a different story, and not all of the stories are happy ones. I would imagine that some days, the doctors just want to soak up as much of the hope in a particular room as they can, so that perhaps they can pass it on to their next little patient.
Our family has much to be thankful for this holiday season. The folks that have kept us in their prayers over the last year and half are among the things we are MOST thankful for! Thank you, thank you, thank you!
Thank you also for keeping the families who have children undergoing treatment, recovering, and the families who have lost a precious child, in your prayers this holiday season. Prayer absolutely makes a difference in the lives of these families.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, November 3, 2006 1:53 PM CST
Greetings! Hope everyone had a great week and a safe Halloween. Erin got to do a little trick-or-treating, and a little hanging out with her friends, and she had a ball! I can't help but recall this time last year -- she felt really crummy on Halloween, and after a very brief bit of trick-or-treating, she asked us if we would take her home. It was pretty heartbreaking. She ended up being admitted to the hospital a day later (November 1st) and was in-patient until almost Thanksgiving. This year, it was chilly and raining on Halloween night -- but we loved every minute of it! Just being ABLE to get out and spend time with friends is such a privilege and a joy. We had a great time!
Back when Erin was hospitalized in Minneapolis, our Child Life Specialist (Jen), suggested that Erin apply for a "Make A Wish." I recall that the hair on the back of my neck stood up the moment Jen suggested we make application -- because I always thought Make A Wish trips were reserved for terminally ill children. I remember literally feeling sick when she brought it up. She must have noticed the stricken look on my face, because Jen went on to explain that Make A Wish fulfilled wishes for any child who had been through a life-threatening illness, and Erin qualified. She said she encouraged all of her patients to apply -- because it's a fantastic organization that does some pretty amazing things for kids, and she felt strongly that all of the kids who have undergone a bone marrow transplant have earned a "wish"! (I agree.) Erin's wish was to go on a Disney Cruise, and it looks like we're finally moving toward taking our trip. It's thrilling now that it's starting to come together. It has taken us a while to get moving on Erin's wish (our application to Make A Wish was lost for several months in Minneapolis; our doctors in Cincinnati were much more conservative about allowing Erin to take a cruise; and then we found out we all needed to get passports in order to take a cruise in 2007). Anyway, I'm pleased to report that we're finally in the process of nailing down a date for the cruise. Above all, I hope this trip is the stuff Erin will dream about for a long time to come. It's going to be great!
So, now the focus turns to the upcoming holidays. It's kind of a bitter-sweet thing. Our family has so much to be thankful for this year, and we are completely aware of that fact. (Truthfully, my first coherent thought every single morning is "Thank you God!") But through our journey, we've met many amazingly brave children whose journeys took them down a different path. I was only able to watch Erin endure the agonizing treatments she had to because in my heart of hearts, I believed in the end she would be well. And she was. To think about her enduring all of the pain and suffering and not prevailing in the end is almost unimaginable. As a parent, ALL you want is for your child to be well. Without hesitation, I would have given Erin the beating heart from my chest if her doctor had told me it would have made her well. This week, we lost another brave little warrior (ga/lbw), and it seems like it gets tougher on me each time. Perhaps I'm just getting more and more sentimental, or perhaps I just realize how fragile life is and how very fortunate we are. Tonight, I am praying for peace -- for this grieving family, for this precious life lost, and for me. I simply cannot imagine the pain this family is going through.
Hug your kids tonight. Have a good week. God bless.
- Barb, Kevin, Jess, Katie & Erin
Friday, October 27, 2006 2:45 PM CDT
How quickly the weeks go by! Happy Friday! Hope everyone had a good week.
We're keeping busy and everyone is doing well. Erin's birthday party went without a hitch, and she and her pals had a great time. (I felt like I was 90 years old by Saturday morning! I wish I had half the energy these girls have!) I can't help but think back to her birthday last year. I'll say it again -- we are blessed, blessed, blessed!!
Things are finally beginning to quiet down around our house. Katie's volleyball team won their championship game last week, and the girls were thrilled. There are so many talented athletes in Katie's grade. When they are all working together, they are a really tough team to defeat! Soccer will wrap up this weekend, and I think Erin has her last cheerleading game on Saturday, though we may end up skipping the game because it's going to be cold and rainy. I can't see risking illness at this time of year. The squad will continue to practice through mid-November because they have one more cheerleading competition.
Tomorrow we get to do something REALLY fun that we've been looking forward to for a long time now. When we returned from Minneapolis last year, Kevin and I promised ourselves we would make a concerted effort to volunteer at the Ronald McDonald House in Cincinnati. After our four-month stay at the House in Minneapolis, we really came to appreciate what an amazing place it is! Our stay in Minneapolis would have been dramatically different if we had not had the Ronald McDonald House to shelter and feed us (... among many other things). I cannot begin to tell you what an amazing charity the Ronald McDonald House is to families with children undergoing treatment for life-threatening illnesses. I can think of nothing that we needed during our stay that the Ronald McDonald House could not provide (with the exception of a cure for FA!!!!) So, ... tomorrow night, we're loading up our cars with family members and ice cream and we are hosting an ice cream social at the Cincinnati House. It is such a great feeling to be where we are today, and to think that we might be able to help a family going through the same thing we did a year ago. It's like we've come full-circle and we are so thankful! We've spent so much time at Cincinnati Children's Hospital over the past year that I would not be surprised if we recognized some of the residents of the house. (However, I would be thrilled to find that we don't know anyone -- that all of the children we met during our visits have gotten better and are home enjoying their lives!)
Not much else to report. The weather has definitely taken a turn. I'm looking forward to the extra hour of sleep we'll gain when the time changes on Sunday morning. I joke often that I "Spring Forward" terribly -- but I'm great at "Falling Back." Just another reason to LOVE this time of year!
I would ask for special prayers today for all of the kids still recovering, in the middle of their treatment, or just beginning their journey. In particular, please remember Nicholas, Sidney, Matt, and the families of Christy and Jake in your prayers this coming week. This can be such a difficult time of year, and I know these families would greatly appreciate your prayers. Thanks from the bottom of my heart!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
P.S. We have many, many new pictures to post -- just no time to do it! We'll try to get a few new ones down-loaded from Erin's first day of school, her competition at the Brown County fair, and her birthday party. I think it's time to retire the summer "kitty" picture for something a bit more current!
Friday, October 13, 2006 2:15 PM CDT
Greetings! Happy Friday the 13th!! Thank you for checking on Erin today. She continues to do very well. We're still running around like chicken's without heads. Everything is busy, but great.
Has everyone gotten their flu shot? We haven't!! Prior to Erin's diagnosis, I never gave flu shots a second thought (never got one!). But since her diagnosis, it's been a necessity for our family to protect Erin. Even when the supply was scarce, we managed to get the kids their flu shots. This year, it's proving to be more of a challenge than usual. Kevin and I will get our flu shots from the pharmacy at a local grocery store -- but neither our pediatrician nor Cincinnati Children's Hospital have a supply of the vaccine available for the girls! I'm trying not to panic just yet. There is no shortage of the vaccine, so hopefully we'll be able to get the shot soon, but in the meantime Erin is being exposed to hundreds of kids every day at school, and I feel like she's at risk.
Our weather has taken a chilly turn. The sun is shining, but it's pretty brisk outside. Katie had a soccer game last night, and by the time the game was over, her cheeks and nose were bright pink and her teeth were chattering! Being the dedicated mom that I am -- I watched the game from the car so that I could keep it warmed up so she'd have a comfortable ride home (there are no bounds to a mother's love...) HA! Actually, I knew it was going to get cold, and I didn't want Erin in the cold for an hour and a half. Erin wasn't happy at all (she's a social butterfly, and it was torture for her to watch friends pass by outside and not be able to talk with them). I felt pretty good about my decision, however, when I noticed half of the parents wrapped in blankets, sipping hot cocoa by the middle of the second quarter. Katie has a game tonight, too, and although it's sunny -- the wind is really cutting. I think the team needs a summer uniform, and a winter uniform. Those shorts just don't cut it in 40 degree temperatures! We only have a few more games to go. The team has had a great season. I'm sure we'll miss it when it's over...
Next week, we celebrate Erin's 10th birthday. You have no idea what an incredible joy it is to be able to type those words!! Whenever I'm tempted to allow myself to be overwhelmed by our crazy, hectic life, or by all of the things in life that hurt or upset me -- I just have to look at Erin and my heart nearly bursts from the sheer JOY of having her in my life! I've shared with some of you that our time in Minneapolis felt like we were on the front line of a vicious, cruel war. Twenty four hours a day, seven days a week, we were in an unrelenting fight for Erin's life and it changed us in ways we never imagined. Time and time again now I find myself just looking at her, and the feeling that washes over me is indescribable. I have never been more grateful for anything in my life (except the gift of each of our girls). This year, we will celebrate the promise of another year, and we will give thanks for the blessings of the past year. Life is so incredibly good!
And that's the latest from our house. Hope all is well with our friends and family! As always, your prayers for Erin, and for children newly diagnosed, undergoing treatment, and recovering (and their families) are appreciated more than we can say. Have a great weekend!
Until next time...
Barb, Kevin, Jess, Katie & Erin
Wednesday, October 4, 2006 2:46 PM CDT
Happy Wednesday! Thanks for checking in on us. I'll be brief today because, thankfully, there really isn't much to report.
We're all in great shape. We had a super-busy week last week, and we've been trying to recover ever since! Erin had cheerleading on Monday night, went to the Brown County fair (cheerleading competition) Wednesday night, had Bethel homecoming last Friday night (parade & football game), and we went to the homecoming game at Wilmington (where Jess is going to college) on Saturday. By Sunday, we were all exhausted! This week has been a bit calmer. I'm beginning to look longingly forward to November, when all of the extra-curricular stuff will wrap up. It's all fun stuff, but it has a way of consuming your life!
The weather in Ohio is fabulous! The trees are really beginning to change color, and the temperture is just perfect. There are little pumpkin stands popping up on street corners all over the place. I'm slowly changing things over to our "fall" decor (Kevin has threatened to kill me if one more decorative pumpkin finds it way into our home. I suppose I should apologize ahead of time, because there are just some things I cannot resist and pumpkins are one of them!) I really love this time of year.
Erin's birthday is October 22nd. Last year she was released from the hospital on the morning of her birthday (with much fanfare from the nurses on the BMT floor at Cincinnati Children's) after a couple of days in-patient. What a difference a year makes! There was no party with friends -- we were still very protective of her. This year, she wants to do it up big, and I can't help but share her enthusiasm. Life is good, and we are blessed!
Please keep Katie's soccer coach (and family friend) Eric Brink in your prayers this week. I came upon a horrifying car accident on my way home from work earlier this week, and later found out Eric was driving one of the cars involved. To say that he's one lucky guy is the understatement of the decade! We are so, so thankful that his injuries will heal -- but we also know that he has a tough time of recovery ahead of him and I know he and his family would greatly appreciate your prayers.
As always, thanks so much for checking in on our little stinker. She is doing incredibly well, and we are incredibly thankful!!!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, September 22, 2006 3:10 PM CDT
Happy Friday! Just a quick update before the weekend. Erin had her one-month check-up at Children's Hospital yesterday. Her counts were all great, and Dr. Harris discontinued the last medication she was taking for the HHV6 virus. Now the nail-biting begins anew! If she develops any symptoms over the next couple of weeks, we're back to square one (sort of). If nothing develops, her doctors will make the assumption that the virus is gone and everything looks good. As of this morning, she's taking a Flintstones chewable and a Vitamin C. At one time, she was probably taking about 30 pills each day. How far she has come! I can't say it enough -- we are blessed, blessed, blessed!!
Erin had to endure her first set of labs without her central line yesterday. I had secretly been dreading this appointment because I've always had a needle-phobia, and it has always been torture for me to see her struggle and cry when they need to draw blood. I have to admit, though, that my phobia has decreased considerably over the last couple of years. I've had lots of blood work done in the last year or so, and after a couple of times, it finally dawned on me that there really wasn't much pain involved -- it was all in my head. When we were finished yesterday, Erin finally agreed that it really wasn't that bad, and that she was making a much bigger deal out of it than was necessary. I think we've turned the corner, and I'm hopeful that our next visit will be much less stressful for her (AND Kevin and I!).
Speaking of our next visit... Dr. Harris told us he was comfortable putting Erin on an every-other-month appointment schedule. How exciting is that? We have never had that much time between appointments since Erin's diagnosis. I think we floated out of the hospital yesterday afternoon! It's so nice to get good news!
I asked Dr. Harris about the vaccination he told us about at the time of Erin's diagnosis (the one that will help protect Erin from the various forms of cancer that are common in FA patients post-transplant). For the last couple of years, the vaccination has been awaiting FDA approval, and I was under the impression that it recently got the "okay" for use. Dr. Wagner told us we should try to time the vaccination for when Erin hits puberty (thankfully, we've got some time before we'll need it). Anyway -- turns out, the "shot" we've been waiting for is the same shot we've been reading about in the newspaper that doctors all over the country (world?) will be prescribing for their young female patients. It helps prevent ovarian cancer in women, and there has been talk recently about whether or not this shot should be added to the list of standard vaccinations given to female patients. Dr. Harris said they should have the vaccination available at Cincinnati Children's for their female FA patients within the next several months. The hold up is due to the fact that there are a couple million young women who are candidates to receive this vaccination, so there is quite a back-log of patients waiting for the shot. By the time Erin needs it, it should be readily available. (Praise God for more good news!) Dr. Harris said the shot has also been shown to be effective in many instances against the head and neck cancers that are common in FA patients. How great is that? The timing could not be better. We are so fortunate to be dealing with this illness now as opposed to several years ago.
So, that's the latest. A good check-up, and lots to be thankful for.
Please keep all of the children newly diagnosed and undergoing treatment in your prayers today. I have been following many children through their websites over the past year and half, but this past week I found the website for a little girl Erin's age who is in the final stages of a courageous battle with cancer. I am not exaggerating when I tell you that her story affected me like none I have encountered so far (and that's hard to believe!). I suppose it's because she's so similar to Erin -- age, the things she loves, etc. -- but I am haunted by thoughts of this little girl day and night. It has caused me to ask the question, "Why this little girl, God? Why must any child have to endure such suffering? And why must any parent have to go through something as devastating as this?" I have never even met this little girl, but I ache for her. And here I sit, in the midst of my answered prayers. I just don't know what to think. I cannot wait for the day when no parent will ever have to say good-bye to a precious child. It's so hard for me, with my simple mind, to understand the really "big" picture. I guess all we can do is ask God to give us peace that surpasses all understanding -- because I just don't understand.
Until next time...
- Barb, Kevin, Jess, Katie and our little miracle
Tuesday, August 29, 2006 2:57 PM CDT
Greetings! Thank you for checking on Erin.
I'm happy to report that after a year and 4 months, Erin is now central-line free! The day did not go quite as smoothly as we had hoped (originally, it was going to be a 20 minute procedure that required only anesthesia through a gas mask) - - but things rarely go as smoothly as we anticipate, and in the end, the line was gone and that was what mattered the most.
Apparently, lines placed in Minneapolis are different from the ones in Cincinnati (...go figure!). They had to make an incision above Erin's collar bone to remove the upper part of the line. The procedure took an hour instead of 20 minutes, and Erin ended up getting an I.V. for anesthesia. She was a bit bruised and groggy after it was all said and done, but the line was gone and she was happy. She even managed to sneak a swim in before school started. When she dipped her head under water at the pool for the first time in a year and a half, the look on her face was priceless! My dad took pictures. I'll try to get them posted on the website. She ended up playing in the pool for three solid hours that day. She was a happy camper!
The first day of school was outstanding as well. At first, Erin didn't want Kevin and I to walk her to her classroom. (Can you say, "Devastated"??) When you're in the 4th grade, you don't need your mom and dad to walk you to your class anymore (regardless if it is your first day back after a traumatic medical procedure and a grueling year of recovery!!) However, Kevin and I prevailed in the end because she realized that she NEEDED us! HA! (Actually, she had a bunch of school supplies and she could not carry everything by herself!) She probably hated it -- but I loved being there and seeing her get settled into her new classroom with all of her old buddies. I think at this point, Erin just wants to be a normal kid. No manic, goofy mom hovering around making her feel different. (Sigh.) What am I going to do with myself now?
Erin has been a bit congested over the past week. She's been fighting a head cold, and I had decided that I was going to call the doctor if the symptoms didn't go away by mid-week. And guess what? On my way home from work last night, I got a call on my cell phone from Erin. She said her ear was stopped up, and it hurt. I called our doctor at Children's Hospital, but he was gone for the day. So were all of the other folks we normally deal with at the hospital. So, rather than make her wait until today to get some treatment, I called our pediatrician. We have not been to the pediatrician's office since Erin's diagnosis in 2003! (Our pediatrician once told me that once Children's Hospital gets ahold of one of their patients, they pretty much lose custody of the child!) Anyway, since Erin's immune system is functioning well and her ANC has been normal for ages, our pediatrician didn't see any reason why he could not check her out. Turns out, she has an ear infection. He prescribed an antibiotic and an over the counter medicine for congestion, and after one dose of both, she was as good as new. I contemplated keeping her home from school today so that she could get a full 24 hours of the antibiotic in her system before she went back -- but she BEGGED me to let her go to school today. (How about that? Have you ever heard of a kid BEGGING to go to school? I was stunned!!) Kevin said he thought we should let her go. She truly did seem fine. What an amazing kid! It looks like that new little immune system is just humming along. What a joy!
So, ... that's about it from our end. The girls are back in school and doing well. Life is hectic and wonderful and we feel very blessed. Erin starts piano lessons tonight. Can you believe it? I'm thrilled.
Please keep the kids (and adults) newly diagnosed, in treatment, or recovering in your prayers today. Prayer absolutely makes the difference. Thanks for checking on us!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, August 15, 2006 3:00 PM CDT
Greetings! Thank you for faithfully checking on Erin.
I guess there is no denying it - - summer is just about over! Part of me hates the fact that school is about to begin again, simply because things become very hectic on the home-front (homework, soccer, volleyball, cheerleading, piano lessons, etc., etc.). BUT, part of me is thankful beyond measure that we are back to the "old" hectic lifestyle! There is something utterly wonderful about having healthy children who are able to participate in all these fun things! The girls will start school on Wednesday, August 23rd. They are anxiously awaiting their classroom assignment letters. It's a race every evening to see who can get to the mailbox the fastest. (I hope we get the letters quickly before somebody gets hurt!!)
I took last week off work. We didn't go anywhere, but we did manage to work a few fun things into the week. Erin and I enjoyed a very nice visit with a new friend named Samantha. Samantha is another FA patient who lives relatively close to us. We've been trying to get together for several months now, so it was a treat to finally have the opportunity to visit for a little while. I remember when Erin was first diagnosed -- how completely overwhelmed we felt. Kevin and I were desperate to speak to someone who could give us hope. Being where we are now in the process, I am thankful for every opportunity to provide hope to families who are just starting the journey. It's no picnic -- that's for sure. But Erin is a living testimonial that there most definitely is HOPE!
This coming Friday, Erin is scheduled to have her central line removed. What a milestone that will be! I recall the day they put her central line in. At the time, I thought it was absolutely awful -- but very quickly I came to appreciate what a valuable instrument it was. No more pokes. The more they used it, the more I appreciated it! Now, we've come to take it completely for granted. No pokes, no uncomfortable doctors appointments. I have a feeling we are REALLY gonna miss that thing when it's gone! Fortunately, we are only making monthly trips to Children's Hospital now. Hopefully, our visits will only get fewer and farther between. I have to say that Erin's central line was a God-send. It did it's job faithfully, dependably and wonderfully. I thank God daily for the person who invented the central line!!
Other than that, there isn't much to report. Central line out on Friday -- school starts next Wednesday. We have a big week ahead of us! It's all good.
Please keep all of the children newly diagnosed, being treated, and those recovering in your prayers today. I am discovering new websites almost daily, and the need for prayer is overwhelming! These kids are absolutely among the bravest little souls I have ever met, and what they go through is just heartbreaking.
I will hopefully have some new pictures to post after Erin's first day back at school. It's going to be wonderful!
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Monday, July 24, 2006 12:29 AM CDT
See picture above for strange new development in Erin's post-transplant recovery!! We fear she must have gotten some "kitty" cells mixed in with her new bone marrow. (HA!) Actually, this is Erin at Kevin's company picnic this past weekend. (I thought we were never going to get her to wash her face!)
All continues to go well in the McKee household. We did have a bit of a scare last week. Erin was due to go back to the hospital last Thursday for her second set of vaccinations, and she greeted me that morning with the words, "I think I'm going to throw up..." (you cannot imagine how I dread hearing those words!) Sure enough, she was sick most of the day. She had exactly the same symptoms we battled back in November and December, so we were scared to death that the virus had returned. However, I'm happy to report that by early evening, she was feeling much better and her symptoms were gone. And the best news is, she's been fine since then. This is the first time she's really battled anything with her "brand new" immune system!
Since she was not able to make her visit last Thursday, we have rescheduled for this Thursday. I'm curious to see how it goes this week. We're on our third week of oral antibiotics, and Erin seems to be tolerating the change very well. I've still got my fingers crossed that we'll be able to have her central line taken out in mid-August. I REALLY want it out before she goes back to school.
Speaking of school, Erin and I are gearing up for school shopping! I can't wait. This year, I suspect Erin will savor every moment as she prepares to make her triumphant return to the classroom! I can't imagine that there is a more enthusiastic 4th grader in our school system this year. ... Life is just so good!
Well, that's the latest. As always, thank you for checking in on Erin. Thank you also for your prayers for other FA patients who are still struggling or undergoing treatment. Matt Pearl's white blood cell count is up to .2! Trust me folks -- you want to shout it from a mountain top when that count begins to go up. What a joy!
Have a great week!
Until next time...
- Barb, Kevin, Jess, Katie & Kitty (oops, I mean Erin..)
Tuesday, July 11, 2006 3:27 PM CDT
Happy Tuesday! Thanks for faithfully checking on Erin. Sorry that the updates have been few and far between lately. In our case, no news is good news!
Regarding Erin's week of Girl Scout day camp -- she not only survived it, -- she CONQUERED it! I was fearful that we had bitten off a bit more than we could chew, but I was completely wrong. She went full days, all week, and instead of being exhausted when we picked her up each afternoon, she was bouncing off the walls! She absolutely loved every minute of camp. It was SO much fun to see her participating in normal summertime activities that she hasn't been able to do for so long. Suffice it to say that her week of camp was a complete success!
We've also made progress regarding Erin's medications. As most of you know, Erin's been on a daily dose of IV Gancyclovir since last January to help control the HHV6 virus that she was diagnosed with late last year. The medicine worked like a charm, and she has been symptom free for months now. When we tested Erin to see how she responded to the tetanus shot she received back in May, her response was very good, so now the plan is to discontinue the IVIG, and switch her to an oral form of Gancyclovir. That means we will not be using her central line for anything but lab work, and we will only be going to Children's once a month or so, provided that everything continues to look good. Please pray that she remains healthy and strong as we make these changes. Our hope is that none of her symptoms will return, and we can arrange to have her central line removed very soon (... perhaps in time to get a swim or two in before the end of summer???).
Other than that, there isn't much to report. Kevin had to appear before the grand jury regarding the attempted break-in at our house. It really didn't amount to much, and it appears the "thief" is going to spend a reasonable amount of time in jail (apparently he had a considerable wrap-sheet prior to the incident at our house). I've come to the conclusion that it was a fluke that he wound up at our house -- but I'm still a little bit shaken by the whole thing.
The girls are enjoying their summer, though we really have not been able to do much or go anywhere. We're hoping to take a trip before they go back to school next month, but that remains to be seen.
Please keep Matt Pearle in your prayers as he prepares to undergo a bone marrow transplant in Minneapolis later this week. Matt also has Fanconi Anemia. His sister (another FA patient) underwent a bone marrow transplant in Cincinnati about 5 years ago. I believe she is doing well today, but they were not able to locate a perfectly matched donor for Matt. My message to his family is, "Keep the faith! Minneapolis is in the business of working miracles." I thank God for our miracle every single day.
Please say a special prayer for Nicholas Boggs as he prepares to go to FA camp in a couple of weeks. You can check out his website to see how excited he is about this camp (va/nicholas.e.boggs)! What a cutie!
I'll try to update more frequently as time permits! Thanks for your prayers for Erin, and for all the families who are struggling with illness. They are most appreciated!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, June 20, 2006 11:36 AM CDT
Greetings! Thanks for checking on Erin. She is enjoying her summer. I think I can actually see her getting stronger with each day that goes by. It's amazing! She begins a week of Girl Scout day-camp next Monday. The camp runs from 9am - 4pm Monday through Friday. That schedule may be a little bit ambitious, but Erin is excited and can't wait to go. I think we'll try it on Monday and then decide how to handle the rest of the week. If she's tired after Monday, perhaps we'll just attend partial days. I am still in awe when I think about where we were a year ago in this whole process. Day camp was a dream at that time!
On a profoundly sad note, we lost two very courageous little boys this past week, and it was heartbreaking. "Amazing" Jacob (fl/jacob) passed away a week ago Sunday night. He was 6 years old. I don't think anyone was expecting it, so it was quite a shock to read on his webpage Monday morning. I believe Jacob was afflicted with a very rare form of cancer. Though he was only given about 9 months to live at the time of his diagnosis, he survived over two years and enjoyed some remarkably "healthy" times during those two years. He truly was Amazing. We also lost another little boy named Will to cancer last Monday (ky/will). Will was only three years old. There is something so utterly tragic when a child fights so hard, for so long, only to lose the battle in the end. My heart just aches for each of these families. It hits so close to home for those of us who have children who have struggled with a life-threatening illness. I have been in a "funk" all week long. I guess this is all part of the journey. You come to care very deeply about these children, and each loss is devastating. Please keep these families in your prayers as they go through this very difficult time.
We had a little excitement at our house yesterday! Apparently, while we were at work, someone tried to break into our home! There was a telephone message waiting for us from a Sheriff's Deputy when we got home last night. To make a long story short, they apprehended the guy on our front porch! He had already stolen from a home in our neighborhood, and someone (thankfully) followed him back to our house. The police arrived before he was able to do any damage or steal anything from us. He did take a package that had been delivered and left on our doorstep, but the police retrieved it (they are holding the package as evidence). The most disturbing thing about the whole situation was that the thief was apparently under the influence of drugs. It makes my skin crawl to think that the girls could have been home when all this took place yesterday! For those of you who have never been to our home, we live in a small, rural town where "crime" is practically a dirty word. You just don't hear much about it, so we were pretty shocked yesterday. I guess one good thing came out of the whole experience. I am less naive about the fact that this kind of thing DOES happen, even in little rural towns where you know just about everybody.
Please remember my brother's mother-in-law (Darlene) in your prayers this week. She's been feeling absolutely crummy for months now, and the doctors are having a difficult time getting to the bottom of the problem. I know she is anxious to feel better, and would appreciate your prayers today.
Thank you so much for faithfully checking on Erin, and for remembering her in your daily prayers. We appreciate it so much!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, June 7, 2006 3:23 PM CDT
Greetings, and thank you for checking on Erin today. We finally got some concrete results from our recent trip to Minneapolis. Her bone marrow reflects 100 percent donor cells, cellularity of the sample they took was 60 percent, no evidence whatsoever of GVHD, liver, kidney, thyroid, etc. all functioning normally; immune system funtioning in the normal range -- everything looked great. The only result that did not fall in the normal range was the DEXA bone scan which showed her bone density to be lower than normal, however, the doctor that reviewed the scan said it is not only common, but expected, that the bone density would be low after chemo, radiation, and nearly a year of being inactive. Her Vitamin D count was excellent, which the endocrinology doctor was very happy about. The doctor recommended a calcium supplement and exercise. She told us that she expects everything to be back in the normal range by the time we return for our yearly follow-up visit next spring.
The limp that Erin had recently seems to be resolving itself. We've had x-rays done on her hips, knees and feet, and everything looks fine. I took her to StrideRite two weekends ago and got her a new pair of gym shoes with better support, and she seems to be walking better. At one point last weekend, I noticed her walking with no limp at all, so I think it's just a matter of stretching out those muscles that haven't gotten much use until recently. Overall, Erin is doing fabulously!
I've been checking our friends websites frequently over the last couple of weeks, and it looks like everybody is doing well. What an amazing year we have all had! I am so thrilled when I read that life is humming along for each of these children. A year ago, none of us really knew what to expect; we were just soldiering along and praying constantly that everything would be okay. I am so thrilled to read that the kids are, once again, able to be kids! The end of the school year, dance classes, driving lessons, fishing, baseball games and soccer practice -- it's just absolutely incredible to see how all of the kids have bounced back. Isn't it amazing how resilient children are? And don't we serve an awesome God? We are all very blessed.
Erin and Katie are enjoying their first week of summer break. We have several camping trips coming up, and we're looking forward to that. The girls have already gone swimming, though Erin is not allowed to get her central line wet, so she's not doing any "deep sea diving" just yet. Regardless, I know she enjoys just floating on a raft and putting her feet in the pool. We're hoping to have her line removed in the next month or so.
That's the lastest from our end. We really appreciate your prayers for good test results! Through my affiliation with the prayerbear prayer group, I've come to know about several children who are very sick right now and would appreciate your prayers. If you have a moment, please check on a couple of these: fl/jacob, ky/will, visit/skyler (a newer Caringbridge website), and please keep Nicholas Boggs in your prayers as well (va/nicholas.e.boggs). Thanks in advance for your prayers for these children.
I guess I'll close here. Happy summer!!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, May 24, 2006 2:04 PM CDT
Day: One Year and 13 days!
Thank you for checking on Erin today! Things are going well in the McKee household. We returned to Minneapolis last week for Erin's one-year follow-up visit. I have resisted the urge to update the webpage until I had some test results to share. Though I have not gotten to speak with Dr. Wagner personally, I did speak with his assistant today and she said he told her to pass along that all of Erin's preliminary test results looked good. No specific data to report, but if Dr. Wagner thinks it looks good, that's good enough for us!! I did speak with the endocrinology doctor this morning, and she told me that all of the endocrinology test results looked GREAT.
Our meeting with Dr. Wagner was uplifting and encouraging, as always. We reviewed everything that has gone on since we left Minneapolis last August and put together a plan for the next couple of months. Erin received her first set of vaccinations last Friday while she was still under anesthesia from her bone marrow biopsy. (Be careful what you wish for! I was anxious to restart her vaccinations, but unbeknownst to me all of her vaccinations were intra-muscular -- the most painful kind!) She winced with each shot, even under anesthesia. The next set of shots she receives (in 2 months) will be without the benefit of anesthesia, and she will get all five shots at one visit! That is one appointment I am NOT looking forward to. (Maybe this will be a "daddy" visit. What do you think?) However, it's ALL good. Vaccinations mean we are well on our way to restored health, and we are SO, SO THANKFUL for that!
We are going to test her in a month to make sure that her system has responded appropriately to the vaccines, and if everything looks good, Dr. Wagner wants to aggressively taper her off the remaining meds (gancylovir and IVIG) and remove her central line. Progress! We love it!
Being back in Minneapolis was nice. I'm not exaggerating when I tell you that Kevin and I know every crack in the sidewalk between the Ronald McDonald House and the hospital. I couldn't help but look up at the window of Erin's old hospital room every time we walked by, and I said a prayer for the child occupying that room now. For us, that room was a room of healing. I pray that it will be a room of healing for the child that is there now.
Erin had her last day of tutoring yesterday. It was a bitter/sweet day! Erin had, in my opinion, the most fabulous tutor ever to walk the face of the earth. Ms. Bowen (Denae) is not only a great teacher, she's a great person. Erin thrived under her direction. We are really going to miss seeing Denae each week. I feel bad for Erin's teacher next year. Ms. Bowen is a tough act to follow!!
Tonight we are signing Erin up for a week of summer day-camp. How fabulous is that? For the first time in a long time, Kevin and I are able to take deep breaths and actually relax a bit (... a tiny bit, but a bit nonetheless!). Today, life is really good. Praise God!
We will update when we get more test results back. If you have a moment, check out Erin's new picture. Talk about "man's best friend!!"
As always, thank you for remembering Erin and the other children we have mentioned on this webpage in your prayers.
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Friday, May 12, 2006 2:46 PM CDT
DAY 366!! (Hooray!!)
Wow! One year and one day post-transplant, and life is good! Thanks for checking in on our little stinker.
Yesterday was the one-year anniversary of Erin's transplant. As luck would have it, we had an appointment scheduled at Cincinnati Children's hospital, so we were not able to spend the entire day celebrating as we would have liked to. In spite of that, it was a great day. Erin's visit went very well, and all of her lab results were excellent (WBC: 5.5, HGB: 13.1, Platelets: 223,000, all renal and liver counts normal). We celebrated with balloons and cake after dinner. Erin was in rare form all day. It was such a great day. I'll say it again, ... we are blessed beyond anything we deserve, and we are thankful!
A special thanks goes out to everyone who sent Erin cards to honor her big day. She received a stack of cards in the mail (getting mail ALWAYS thrills her!). She also got a surprise in the mail from her Great Aunt Jean & Uncle Bob, a special phone call from Ms. Bowen (her tutor) and her 3 small children, a telephone call from Logan ;), a card from Ms. Senger (her teacher at school), and homemade cards from her classmates. We took pictures during our little party last night, and hopefully we'll get a couple posted to the webpage this weekend.
Next week, we head north to Minneapolis. I'm looking forward to this trip. I was a little frustrated during our visit to Children's yesterday. When I brought up the subject of Erin's immunizations (the doctor and I have had a back-and-forth dialogue about this for nearly two weeks now), he seemed surprised and told me that Erin's counts were "far" too low to consider re-vaccinating her at this time. I was stunned! We've talked (or e-mailed) several times over the last two weeks on this very topic, and he previously told me she was fine to begin getting her shots (the killed vaccines, anyway). Erin's most recent immune study revealed that her system is now functioning at a normal level. I didn't know what to think! Turns out, the doctor had Erin confused with another patient. Personally, I find that a little frightening. (Good thing he wasn't prescribing medicine for her yesterday!) Perhaps I'm overreacting, but how do you forget a patient you've been seeing weekly for the past 9 months?? He left Erin's room yesterday without making any decision whatsoever on the vaccination question, and then sent our nurse back in to tell me that we should just let Minneapolis make the call regarding shots. (Sour grapes? I don't think our Cincinnati doctors have ever been able to get beyond the fact that we went to Minneapolis for Erin's transplant.) Regardless, we will defer to Minneapolis to make the decision regarding vaccinations, when to remove her central line, etc.
The thing I absolutely LOVE about Minneapolis is that, from day 1, they have treated Erin like a little girl that was getting BETTER. The doctors in Cincinnati have always seemed skeptical about her recovery. I sometimes wonder how much of a child's recovery is psychological. Even while we were still hospitalized in Minneapolis, the doctors and nurses were reinforcing to Erin that she was getting better every day. Hearing that, even on the days when she felt absolutely crummy, made her believe it. And today, I'm pleased to report that she IS better.
So, next week, we head North. We would appreciate your prayers for a safe trip, and good test results. We'll update this website as soon as we return from our trip.
As always, thanks for checking on us, and for your prayers on Erin's behalf. Thank you also for remembering all of our friends who are recovering from transplants as well. You're the greatest!
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Tuesday, May 2, 2006 1:26 PM CDT
Day +356
Greetings! Just a quick update. We made our first camping excursion this past weekend. The weather cooperated for the most part, and it was fun. We put the camper through all the drills, and everything worked beautifully. I think Erin loved it more than anyone. I also think I got on her nerves when we were sitting around the camp fire, and I kept telling her to move her chair because the wind had shifted directions and the smoke was blowing toward her. (It was funny at first -- but after about the 20th wind-shift, she wasn't laughing any more!)
We got some excellent news from Dr. Harris yesterday. He said her immune system was sufficiently recovered to begin getting her immunizations again (the "killed" vaccines, anyway). I was thrilled. (Erin was not! Go figure.) Dr. Harris also told us to discontinue the final oral medication Erin has been taking for over a year now (V-fend). He said to finish up whatever pills she has left from the last time the Rx was filled, and then pitch the bottle. Whoopee! We will probably have some type of "pill bottle pitching ceremony" complete with snacks and drinks when the day arrives (we figure we've got about two weeks worth of the medicine left). Erin asked me to call Dr. Harris back and ask him if she could skip the shots and just keep taking the V-fend indefinitely. She thought that was a reasonable tradeoff. I had to laugh.
I was so excited when I got the e-mail from Dr. Harris yesterday! I think getting the okay to start immunizations again is yet another sign that we made it through this, and things are going to be okay. At precisely this time last year, we were enjoying our last day of freedom before Erin was admitted to the hospital to begin her radiation and chemo. We were full of hope --- and scared to death. Erin was admitted to the hospital on May 4 (a Wednesday), and she was released on June 21st.
We're heading back to Minneapolis on the 17th. We are praying for a GREAT test results and a GREAT trip. It will be nice to see all the nurses and doctors who were so kind and helpful a year ago. I'm am just SO thankful for Erin's recovery. Life is very, very good.
Hope all are doing well. I am seeing good reports on many of our transplant friends web pages. God is so good!
Thanks for all you have done for our family over the past year. It is impossible to adequately express our appreciation for all of your prayers and your support. Thank you, thank you, thank you!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, April 21, 2006 2:41 PM CDT
I think it's high time we post a new picture of Erin on the front page, don't you? The Christmas tree in the background seems very inappropriate at this point, especially when you consider we're spending most of our free time now mowing the lawn and planting flowers!!
Sorry for the delay in updating the web page. Somehow the last couple of weeks really got away from me. I'll try to be better about it in the future!
Erin had her follow-up endoscopy last Thursday. It was a long day for Erin, but she handled it very well (... as usual). The pictures looked much improved over the ones we saw back in December. As we've said many times, she is dramatically better than she was late last year. She's eating well, her energy level has improved. It's obvious to us that she's feeling much better. So ... you can imagine our surprise when Dr. Harris called and told us that the biopsy results were the same as (or possible a bit worse) than the results from December! I don't know who was more stunned -- Dr. Harris, or us! We are totally perplexed at this point. Dr. Harris conceded that the biopsy process is not an exact science, and that something could have skewed the results. At this point, we've decided to begin tapering her medicine to see how her own immune system will work in getting, and keeping, the HHV6 virus in check. The immune study that the Dr. Harris did the week before last came back normal (Yeah!). I guess he's thinking that now her own immune system may be capable of getting rid of this virus without all the harsh medicines we've been giving her (which also served to surpress her immune system recovery to a certain extent).
So, that's the latest. She's still limping around a bit, but we've come to the conclusion that it's her ankle that's causing her to limp. She doesn't do it all the time, but I really notice it in the evenings when she's had a busy day. She has absolutely no pain, which is a good thing. We are heading back to Minneapolis on May 17th (assuming there is no pilot strike at Delta!!). We will be meeting with Dr. Wagner and a couple other doctors on the 18th & 19th. They will be doing a bone scan as part of her 1-year check-up, so we will be very anxious to get those results back. We are praying hard that everything looks good.
It's hard for me to get my mind around the idea that at precisely this time last year, we were frantically making last minute preparations for our trip to Minneapolis. It is still very surreal. It was as if life stood still while we were going through Erin's transplant. Now that we're home and life is slowly but surely getting back to normal -- it almost seems like a dream. I am tempted to call it a "nightmare" -- but I don't think that would be fair. There were many, many good things that came from that time in our lives. Obviously, we thank God every single day for Erin's recovery. It is nothing short of a miracle. We also thank God for all of the very special people we were privileged to meet during our time in Minneapolis. We look forward to seeing some of them when we return next month. We are better people for having gone through this experience, and we are thankful. We look at life differently these days.
Thanks for faithfully checking on Erin. We really appreciate you! Please keep her in your prayers as we prepare to head back to Minneapolis, and please say a special prayer for her on May 11th -- her one year anniversary!! Please also keep our friends in your prayers as they continue to recover from transplants: Jared, Devin, Terrell, Tommy, Whitney, Jordan, Nathan and Sidney.
And also please keep Jessica in your prayers. She has been experiencing severe back pain and her doctors are having a difficult time pinpointing the source of her pain. Rickie is also still recovering from surgery and would appreciate your prayers.
Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Tuesday, April 4, 2006 8:03 AM CDT
Greetings, and thanks for checking on Erin! We really don't have a whole lot to report, and that's a good thing! I was a bit concerned last week because Erin seemed to be walking with a limp. I mentioned it to her doctors at our visit last Thursday, and they put her through a battery of tests, and did an x-ray, and everything looked fine. She has never complained of any pain whatsoever, so it was perplexing. At this point, we're thinking that maybe it's just a result of her increased activity level recently after nearly a year of sedentary lifestyle. She's also grown a lot over the last couple of months (both in height and weight). If the limp persists, they may opt to do a bone scan at some point, but for now, the doctors are not particularly concerned. I can tell by the way she's acting that she's feeling good. With every day that passes, I see more and more of the "old" Erin (fiesty, silly, fun loving stinker!) It's such a joy!
We have an endoscopy scheduled for April 13th. We think we've got the HHV6 virus under control. Erin has been symptom-free for a long time now, but the 13th was the soonest they could get her scheduled for the test. That's both good and bad - - good because they refused to list her as an "emergency" patient because she's doing so well (which meant we were not a "priority" when it came to scheduling the appointment), but bad because she has to continue to take the Gancyclovir two times a day until we get the results from the test. We've been administering this medicine through her central line two times each day since early January. I know it's some pretty toxic medicine (we have to handle it and dispose of the materials according to chemo guidelines!). I have asked the doctors repeatedly what the potential negative side affects might be as a result of being on this medicine for a prolonged period of time, and they have told me, repeatedly, that the only possible side affect is a decrease in Erin's CBC counts. So far, the medicine has not had any negative affect on her counts (WBC, hemoglobin and platelets), so they tell us she's fine. Who am I to question the experts? The medicine has obviously done the trick, because Erin has improved dramatically since January. So, ... we're just hangin out waiting for this test on the 13th. Hopefully the results will allow us to cut back on the medicine she's on, and also decrease the number of visits we need to make to the hospital (we're still going once a week!).
We picked up our new camper (5th wheel) over the weekend. We have our first camping trip scheduled for the end of this month. We've had a few glimpses of beautiful spring weather recently, so we're really getting anxious. Friends at church have planned a get-away for the end of this month. The timing is absolutely perfect! We didn't realize how much "stuff" we had packed in our old camper until we had to empty it out when we traded it in. Now, all that "stuff" has to get put away in the new camper. It's actually kind of fun. We really are thrilled to be able to camp again. I used to think it was a lot of work, but not being able to do it for a couple of years now has changed my perspective completely. It will be a "victory" campout for our family!
Other than that, there isn't a lot going on. Terrell continues to improve in Minneapolis (another amazing recovery!). Tom Neddo is undergoing an endoscopy as well. We're praying for good test results for him. Whitney -- our miracle girl -- is doing incredibly well (Check out her website when you've got a moment -- mn/whitney. She had surgery planned to remove a large tumor, but when the doctors went in to do the surgery, they discovered the tumor was gone. GONE! There was joyous celebration in the Osborne household, as you can imagine. Praise God!!). Jordan was hospitalized recently, but he seems to be doing better and will hopefully be heading home very soon. Brian is home and LOVING it! (after spending the winter in Minneapolis, Florida is paradise!!). Overall, the kids are all holding their own. Please hold Nicholas close in your prayers today (va/nicholas.e.boggs). He is another precious FA patient who has become transfusion dependent. We know, too well, how terrifying this illness is, and we are holding he and his family close in our prayers. I know they appreciate every prayer that is lifted on Nicholas's behalf.
Thanks for faithfully checking on Erin. Your prayers have made all the difference!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, March 20, 2006 3:38 PM CST
Happy Monday! Hope all is going well with our friends and family today. Not much to report from the McKee household. Just busy, busy, busy. Erin had another great weekend. Kiley spent the night with her on Saturday (a first since transplant!) and went to church with us Sunday morning. It was a great weekend. We had lots of sunshine, but it's been cool here.
We are welcoming the arrival of spring with a "Winter Storm Warning" hanging over our head tonight. They are predicting several inches of snow in the next 24 hours. Typical Ohio spring weather! At least the snow won't stick around long. We've had some nice, warm weather recently, so the ground is still pretty warm.
There really isn't much to report. We're tackling some projects around the house, and it feels really great to finally be getting some of these things done. Once the weather gets nice, the emphasis will be shifting to the outside. We have a deck to build and we need to get our yard (nearly 5 acres of it!) seeded. It's going to be a busy summer -- but we can't wait!
I'm delighted to report that all of our friends from Minneapolis are stable or doing well tonight. So many answers to prayer, and so many miracles!! (So many thankful parents!!!) Please continue to lift Rickie (Jessica's mom) up today as she continues to recover from her recent surgery. I know she would appreciate it.
As always, we thank you for your prayers and your support today and throughout the last year. You are among the things we are most grateful for!! Have a great week, and God bless!
- Barb, Kevin, Jess, Katie & Erin
P.S. -- We're long overdue for some new pictures! I'll try to get some new ones posted this week!!
Tuesday, March 7, 2006 2:33 PM CST
Day 300!!
It's been a long time since I've posted the "day" above. Today, it seems very appropriate to add it up there! It's hard to believe it's been 300 days since Erin received those life-giving cells in Minneapolis. It's been a long, stressful (at times) 300 days, but it thrills me to think about how far we've come and where we are today. Today, the sun is shining, the sky is clear and blue, and life is very, very good.
Erin had a good week last week. The cold that we've all been fighting seems to be going away. I made sure to ask our doctor last week about Erin's cold symptoms and what we could do to stay ahead of it. He reminded me that the IVIG that Erin gets each week at Children's is designed to protect her in situations exactly like this. (How quickly we forget!) IVIG is basically an antibody infusion that gives her own, immature, immune system a little help at this time of year to fight off all the bugs that are going around. Our weekly trips to the day hospital have become so commonplace that I had nearly forgotten WHY we were going! (We show up, they hook her up, we watch some television and do crafts, eat some lunch, and head home. It's feels more like a "craft class" that we take each week at the hospital! Ha!) Anyway, it was nice to hear that we're ahead of the game in this regard.
Erin had a friend over last Saturday. Our experience since transplant has been that Erin tires out easily, so we've kept our "play dates" brief up till now. However, she and her buddy played most of the day on Saturday, and were still going strong when Kiley's mom came to pick her up 7 hours later. Erin had a ball. They are planning on getting together again next weekend. Admittedly, Erin was dragging a bit on Sunday, but I'm sure if you asked her, she'd tell you it was worth it. It's nice to see her be able to enjoy time with her friends again. I'm so happy for her!
Everyone in our family is looking at life a little differently these days. The simple act of taking a walk on a warm spring evening with the girls is one of the most pleasant things I can imagine! At this time last year, even simple pleasures like that were tainted with a sense of sadness and fear. Today, life simply could not be better. We are blessed, and we are thankful beyond measure! God is so good!
Please remember our friends who are still recovering tonight. It's a journey we are all on -- and with God's help, we just keep moving in the right direction. I am so looking forward to the day, years down the road, when we're sitting around our dinner table celebrating one of our grandchildren's (!!) birthday's and we tell the story again about the summer we spent in Minneapolis -- where Erin, and the entire family, went to get well. I hope we never forget how it felt -- how grateful we were for God's healing touch, and for the life of a precious little boy in Great Britain whose stem cells saved Erin's life.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, February 28, 2006 12:38 AM CST
Greetings! Thanks for taking a moment to check in on Erin. She continues to do very well, and we are thankful. Our mini-vacation in Gatlinburg was wonderful! We apparently left the State of Ohio just in the knick of time, as we heard many reports of really bad weather from home while we were gone! By the time we returned, there was no evidence of it whatsoever. Overall, it was a pretty low-key trip, but we did manage to stop by the Boyd's Bear Factory in Pigeon Forge, and play a round of putt-putt at the Adventure Golf place in downtown Gatlinburg. Erin even scored a cool cap from the Gatlinburg Harley Davidson shop. Everybody had fun, and the change of scenery was fantastic. We even got to spend a little time with my brother, Steve.
Erin's visit to Cincinnati Children's went well last week also. The only "blip" on the screen was a slightly elevated creatnine level (1.0). The doctor asked them to re-do Erin's labs, and when we got the results the second time around, her creatnine was lower (0.8). We made arrangements for a nurse from Children's Home Care to come to the house this past Monday to repeat Erin's labs -- and her creatnine level was completely normal (0.4). Hooray!
Katie developed a cold this past weekend, and now Erin and I are suffering from the same thing. So far, it's just a head cold (sinus stuff, sore throat). I'm hoping it doesn't go any farther than that. I've been "fogging" the house with Lysol spray daily, and wiping every surface imaginable with disinfectant wipes. I don't know if either thing really helps, but it sure makes me feel better! In addition to that, every member of our family has dry, chapped hands from all the hand sanitizer we're using. (The sound of the sanitizer pump "swish" makes me cringe, and my hands burn just thinking about it!) But, we do what we gotta do. Katie is already feeling better, so if we can get Erin through this with only a runny nose, I'll be ecstatic.
I guess that's the latest from our end. We do have a couple of prayer requests to pass along to our friends: Terrell has been hospitalized, and at last report, was on a ventilator in critical condition. It sounds like he has taken a few "baby" steps in the right direction, so we are praying hard that this little guy will make another amazing recovery. He's getting really good at scaring us all to death -- and then turning around and bouncing back with flying colors! Please keep him in your prayers. He's quite an amazing little guy.
Jessica's mom, Rickie, had some serious surgery recently, and even though the surgery was a complete success, she is still going through a difficult recovery. I know she would really appreciate your prayers (and praises!) that she will soon be totally pain-free and feeling great for the first time in a very long time! Praise God for the success of her surgery!
Tommy Neddo is still struggling with issues related to his stomach and his meds. It's such a frustrating process -- they prescribe medicine to fix one thing, and that medicine causes a whole new problem. I've said many times that it feels like you're chasing a moving target. Please pray that they can quickly get to the bottom of Tommy's problems so that he can get back to the business of "getting better."
And Nicholas Boggs could use our prayers right now. His family is still awaiting their miracle. What a sweet little boy.
That's the latest. Hope everyone has a great week. Until next time...
- Barb, Kevin, Jessica, Katie & Erin
Tuesday, February 14, 2006 8:22 AM CST
Happy Valentine's Day! I'm updating the journal a bit early this week because we'll be heading south on Friday and won't be back until next Tuesday (... our long awaited Gatlinburg trip!). Erin continues to do very well. She is still getting the Ganciclovir two times a day, and it's working beautifully. The doctors assure me that being on this medicine for a prolonged period of time does not cause any other problems, and I'm taking them at their word. We will decide at our appointment on Thursday if we're going to decrease the dose back to once a day. I'll know more after that visit.
Other than that, there isn't much to report. Mom and Erin dropped her Valentine's Day box and cards off at school yesterday. That was Erin's first trip to school this year! She didn't actually go to her classroom, but she was finally able to meet her teacher, and she thought that was cool. Since Erin is being tutored at home, Ms. Bowen is really her teacher this year (... and we LOVE Ms. Bowen!), but Ms. Senger is her "official" teacher in the 3rd grade. She oversees all of Erin's work and grades all of her papers. I know Erin misses the day-to-day school stuff -- particularly on "party" days like today! However, there are definite perks to being tutored at home -- for example, how many third graders do you know who get to wear their pj's to school, and get to eat breakfast during math class? Every cloud has its silver lining!
I guess that's it for this week. Please keep us in your prayers over the coming weekend. We're really looking forward to the trip, but I have to admit that I'm a bit anxious about being 5 hours away from our doctors here in Cincinnati. There is something very comforting in knowing that they are nearby! Our last family trip was almost exactly a year ago. At that time, we were trying to sneak in one little get-away before we left for Minneapolis. This time, we're regarding the trip as our "9-Month Post-Transplant Celebration." What a joy! God is good.
Please keep Nicholas Boggs and his family in your prayers. His bone marrow biopsy from last week showed very low cellularity in his marrow. His family is incredibly strong, but they are also weary of this miserable illness. They would appreciate your prayers today.
Thank you for all you do, and have done, for our family. We are grateful beyond words.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, February 7, 2006 7:55 AM CST
Greetings! Thanks for checking on Erin today. Our girl is doing well. We did end up adding another dose of Gancyclovir back into her schedule each day, as she was beginning to show signs that the virus was kicking back up a bit. That seems to have done the trick. I just got off the telephone with her this morning, and she sounded chipper and raring to go! What a joy!
We had a good visit to the Day Hospital last Thursday. Her counts all looked great. She's really been feeling good lately, and we are loving it! We had a busier-than-usual weekend, and Erin was pretty worn out by Sunday night. Uncle Kelly was here for a visit, and it was very nice getting to spend some time with him. He told Erin that the whole family would be coming back up for a visit this summer, and now Erin is counting the days. Uncle Kelly has become something of a "celebrity" around here. Those who have faithfully kept up with Erin's progress through our web page have gotten to know him through his journal entries, and I have had so many people ask me about Kelly! He has quite the little "fan club" going here! Kelly has been such a great source of comfort and peace throughout Erin's treatment. We are blessed to have such a wonderful family!
Erin finally received her packet of information from the Children's Wish Foundation. (It made a detour through the Ronald McDonald House in Minneapolis en-route to us!) It sounds like an absolutely fabulous trip. We are all very excited about it. The only caveat at this point is that Erin's doctors at Cincinnati Children's will have to give her the okay to take the trip, and we all know how conservative they are. Erin is hoping to take the trip sometime late this year -- but her doctors may prefer we wait a bit longer. Regardless, it's so nice to have this trip to look forward to. None of us have ever been on a cruise before (... actually, the movie "Titanic" pretty much did me in on cruising. However, under the circumstances, I'm willing to swallow my fear and move boldly forward. I'll just be the freak in all the pictures wearing a life preserver!!)
The weather has finally become seasonable, and we're all pretty discouraged about it. It was surreal having 50 or 60 degree days in January. (I think we got a bit spoiled.) Now that it's back to highs in the low 30's, we're nearly freezing to death. Spring can't get here soon enough! We're also gearing up to start camping again. This should be safe for Erin to do at this stage in her recovery. We have only camped 2 times since Erin's diagnosis in 2003. The camper in the driveway was a daily reminder of something else that she could not do. Now that she's able again, it's a great reminder of the fun that's on the horizon. We can't wait.
I guess that's it from this end. Whitney and Justin continue to improve (praise God!). Terrell was hospitalized with a line infection, but he's home again. Brian continues to improve, and his mom is heading south to prepare things for his return home. It shouldn't be long now. Tommy is still being treated in Minneapolis. We are praying that things will resolve very quickly so that he and his family can head home. Nicholas is going through two days of extensive testing at Cincinnati Children's. Please lift this family up in your prayers today (va/nicholas.e.boggs).
As always, your prayers are always appreciated more than you will ever know.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, January 30, 2006 1:20 PM CST
Greetings, and thanks for checking in on Erin. Not much to report. We had a very nice, normal weekend. What a joy to be able to report that! Though Erin complained a couple of times about a stomach ache, she ate well and had plenty of energy, so we're just playing things by ear. I'll mention it to Dr. Harris at our visit on Thursday. We really can't wait to put this virus behind us. I know we've made a lot of progress over the last several weeks, but I'll be so happy when all of the issues associated with it are resolved. We're getting there.
Our weather has really been nice. Erin took a walk down our driveway and spent a few minutes talking to our new neighbors on Saturday. Kevin said it was really cute to see her standing at the Webb's fence chatting. She's like a 45-year-old trapped in the body of a 9-year-old! The Webb's have golden retrievers and we have labs. The dogs have become good buddies quickly, and they are spending as much time in our neighbors yard as they are at home. I've apologized I don't know how many times to the Webb's. Thankfully, they don't seem to mind it. Come spring, we'll be installing a new "invisible fence" to curtail the dogs wandering -- but in the meantime, we're sharing our dogs with the Webb family.
We were able to attend church as a family again yesterday. It's funny how you take things like that for granted -- but what a great feeling it is to be able to do so again! Whenever possible, Kevin and I took turns attending with Katie over the last several months, but there is something so nice about being able to worship together. Our church family is so dear to us. They've stuck with us during some very tough times, and we are so grateful. I can vividly recall the last few services we attended before leaving for Minneapolis last spring. It was such a powerful thing to be a part of. And now, we are thankful to be back, and able to participate and support other families going through difficult times. It's like we've come full-circle. "Thankful" just doesn't seem sufficient to describe what we feel! It's all good.
That's about it from our end. I'll try to update again after our visit on Thursday. Regarding our friends, after a tough week last week, I'm seeing some encouraging news on their websites. Whitney is improving, Justin seems to be a bit better, Tom is feeling much better, Brian is feeling good and ready to go home (... now, if they can just convince his doctors!), Sidney is back home in North Carolina after several days in the hospital in Minneapolis. Please remember Nicholas Boggs in your prayers this evening. He is not a good candidate for bone marrow transplant, and his counts are alarmingly low. He developed a pretty high fever yesterday, and his family is very concerned. They would certainly appreciate your prayers today.
Thanks for all you do, and have done, for us. We appreciate each of you more than we can say!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, January 24, 2006 3:05 PM CST
Happy Tuesday, and thanks for checking on Erin. She had another good week, and a great weekend. Her baptism went off without a hitch, and it was absolutely wonderful. She was thrilled to be back in church, among friends and family for the big day. Jessica and Katie were baptised at the same time, so it was a fantastic day all-around for our family. Rickie recorded the baptism, and when Jessica played it back for us, the roar of applause from the congregation after each of the girls was baptised was overwhelming. I believe our church family was as excited as we were! We have all waited a long time for this day to come. Though we had hoped to do it sooner, God's timing was absolutely perfect. It was a great day, all around.
As I mentioned above, Erin continues to do very well. Her appetite has remained good, and her HHV6 symptoms seem to be in check. We've backed off some of her meds, and we discontinued her TPN last week, so we're watching her very closely to make sure that we don't backslide. Our goal is to put this virus behind us once and for all, and we are determined to accomplish that this time around! If any of her symptoms reappear in the coming days, we want to be able to react to it quickly and get her back on track. So far, so good.
I'm pleased to report that through it all, Erin hasn't lost her sarcastic edge. At dinner last night, we got on the subject of diets. Erin casually commented, "You'd better cut back on the curly fries, Mom. They are going straight to your derriere." My immediate thought was how tragic it was - - to overcome all that she has in the past year, only to have her young life estinguished at the dinner table over a comment like that. Simply tragic. (Ha!) One thing is for sure -- we haven't lost our sense of humor though all of this. We laughed about that comment all evening long. (Oh, ... and just for the record, I rarely even EAT curly fries! I much prefer the "natural cut" variety.)
Other than that, it's just business as usual. We are keeping busy with projects around the house that we have put off for a while. It's nice to end the weekend feeling like we've accomplished something.
We did get the news today that Erin's "Make A Wish" request has been granted. We have not received the official packet of information from the organization yet, but we expect to receive it any day. I had mixed feelings about even submitting an application to the Make A Wish Foundation, but our Child Life Specialist in Minneapolis assured us that the program was for any child who has gone through a traumatic, life-threatening illness. With that in mind, I think we qualify. Erin's wish was to go on a Disney cruise. It will be great fun having that trip to look forward to. We'll keep you posted as we get more information.
Regarding our friends, several could use some prayer today. In particular, remember Sidney, Tom, Brian, Jordan, Terrell, Nicholas, Whitney and Justin.
Thanks for faithfully checking in on us, and for your prayers on behalf of these kids. We are very grateful!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Wednesday, January 18, 2006 9:33 AM CST
Thank you for checking in on Erin! She had another good visit to Cincinnati Children's yesterday. Everything appears to be moving in exactly the right direction, and we are very thankful. Her counts were great: WBC-7.4, Hemoglobin-10.5 and Platelets-468,000. I am still amazed every time we get new lab results. I can vividly recall getting sick to my stomach as I waited on the telephone for a nurse to give me her CBC results at this time last year. The results were rarely cause for celebration. What a difference a year makes!
We are done with TPN. She received her last infusion last night. Now we're just waiting to see if her appetite stays strong. Her weight was up to... (a little drum roll please...) 26.1 kilos! When she was admitted to the hospital on Christmas night, it was 20.9 kilos (the lowest it's been since transplant). She looks so much better. I'll say it again - we are so blessed! Dr. Harris said that if she continues to do well through her appointment on Thursday, we will cut back our IVIG infusions to one time per week (i.e., one visit to Children's Hospital each week), and we'll be decreasing her Ganciclovir to one dose per day. The plan is to schedule another endoscopy in about a month to see how things look. If they see a big improvement (and we're praying that they will), we should finally be able to resume a more normal schedule (monthly visits vs. two visits weekly) and begin to think about having Erin's central line removed. Having the central line removed is a HUGE step, but it's also a bitter/sweet step. The central line requires daily attention, which is a bit of a nuisance. It's also prevented Erin from doing things like soaking in a bath or going swimming. During warm weather, it has a big affect on what she wears (clothes can't have any elastic or tight areas where the catheter is) and we must be very cautious about protecting the site from injury and infection(can't ride any amusement park rides that bump or shake, or play much with pets who might jump up and catch the line in the process). The obvious down-side to having the line removed is that Erin will be subject to regular "pokes" again at each clinic visit. She has not missed those at ALL. Our visits to the clinic have been relatively care-free lately and we really like it that way.
All in all, we're doing very well. The weather has been unseasonably mild here, which has been nice. It's given us a little glimpse of the nice weather to come and we can't wait. It will be so nice to be able to get outside and play without worrying about bruises or injury! We also have new neighbors with 3 small kids and two big dogs to play with! Life is good in the McKee household.
Regarding our friends, Jordan has been hospitalized recently with fever. It sounds like the doctors know what they are dealing with and are treating it accordingly. Whitney and Terrell are on the mend. Please continue to keep Tom Neddo and Sidney Williams in your prayers. They are working through some problems right now, but are in the right place seeing the right doctors. We are confident they will weather these bumps quickly.
Thanks, as always, for your prayers on behalf of our children. We are seeing miracles every day!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
P.S. I wasn't going to mention this for fear of jinxing ourselves again -- but Erin, Jess and Katie are hoping to be baptised during our Sunday morning service this week. Please pray that we are able to do this, as it has been Erin's wish to be baptised since last summer. She is very excited, as you can imagine.
Friday, January 13, 2006 3:32 PM CST
Thanks for checking in on Erin. Not much to report this week -- which is really good! Erin has had a great week. Our visits to Children's Hospital have been good. Somebody suggested we needed to post her counts again since we haven't done that for a very long time. Her WBC count is 9.2, hemoglobin is 9.0 (this one bounces around more than the others), and her platelets were 399,000. Her doctors are pleased. Her hemoglobin is the count that seems to be affected most by the viruses we've been fighting, and it has remained in the acceptable range throughout the last several months.
Erin is feeling much better. Her energy level is great. Last night, I had to MAKE the kids get in bed at 10:00 pm. They complained and grumbled all the way up the stairs because neither one of them were ready to stop playing and hit the sack. Yesterday afternoon, they were playing upstairs and I overheard them laughing and giggling over something silly one of them had done. I ended up just standing there and listening to them for the longest time. It was so comforting to hear! Laughter in the house again! What a joy. We are so blessed.
We've planned a little get-away for February, and I just can't wait. We have rented a cabin in Gatlinburg with some good friends for a long weekend. We were hoping to make this trip last November, but Erin ended up hospitalized. We're keeping our fingers crossed that we'll be able to make the trip this time. It's not too far from home, so I don't think Erin's doctors will object if she is feeling as good as she does today.
Katie is performing in the Land of Grant Honors Band this weekend. Katie had to try out and be selected to perform in this band. Kids from all over the county came to the tryouts, but only a few were chosen. She's pretty excited. She has more musical talent in her little finger than the rest of the family does put together. This concert is going to take up most of her weekend. She has practice tonight until 9pm, then she has to be back by 9am tomorrow and she'll be there all day. The concert is on Sunday afternoon. We're really looking forward to it.
Regarding our friends: Terrell is doing much better. His spleen improved on its own and the doctors said the problem was due to infection, not a reoccurrance of his leukemia (Amen to that!); Whitney, the miracle girl, is off life support and on the mend (Praise God!); Brian, who has been in and out of the hospital over the last couple of months, is fever free and feeling better. Now they are playing the waiting game to see when they will get the okay to head home. I know his family is VERY anxious. They are from Florida, and this is their first winter in the arctic climate of Minnesota. Talk about climate SHOCK. They have been good sports about the weather. Sidney is heading back to Minneapolis due to some lung issues. She is feeling good, but her doctors at home found something they want the "experts" in Minnesota to check out. It's a nuisance, but hopefully it will be nothing of great concern. Please keep all of these families in your prayers this weekend. I know they all appreciate it very much.
Have a great weekend! We appreciate you checking in on us, and we especially appreciate your continued prayers for Erin's recovery.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, January 6, 2006 2:00 PM CST
Finally -- An update! Sorry it's taken so long for us to update the webpage. We have a good excuse for not updating sooner -- we were in the hospital again (ugh!). Actually, it wasn't so bad. Erin was feeling really crummy the week before Christmas. She just wasn't herself. She was tired no matter how much she slept at night or napped during the day, and she just felt lousy. We ended up taking her to the clinic the Friday before Christmas, and the doctors debated admitting her at that time because she was borderline dehydrated. In the end, they decided not to and made Erin promise that she would drink lots of fluids over the next several days. Though Erin did her part, it didn't seem to help much. By Christmas afternoon, I felt it was necessary to call the doctor to see what could be done. As luck would have it, Erin's doctor (Dr. Schore) was the BMT fellow on call for the holiday weekend, and he told me she had all of the classic symptoms of dehydration. We took her in for some fluids and ended up spending over a week! The good news is we think we've finally figured out exactly what has been causing Erin's G.I. trouble for the last several months. They did another endoscopy looking for GVH and a biopsy revealed that Erin actually has the HHV6 virus (...no sign of GVH, thankfully!). This virus is common among unrelated cord-blood transplant patients, and is probably responsible for all of her G.I. problems since transplant (the only problem she's really had since transplant!). Her episode of EBV and the adenovirus are all related to the HHV6 virus (EBV can trigger reactivation of the HHV6 virus and vice-versa).
According to Dr. Harris, HHV6 is actually transmitted along with the stem cells at the time of transplant. Medication that Erin was on initially after her transplant kept the virus in check, but once that medicine was discontinued, her symptoms started. Since so much of the medicine the kids take (not to mention the radiation and chemo) can typically cause G.I. problems, this was a tough one to diagnose. We are very thankful to finally have an answer to our problem, and something we can target and treat. During Erin's hospitalization, we also asked that she be put back on TPN (IV nutrition) that could run at night while she sleeps. Her weight has been in a steady decline over the last couple of months. Almost all of the meds Erin has been taking list "loss of appetite" as a possible side affect. Go figure.
To make a long story short, she is a "transformed" little girl. She feels good, and looks good. Her energy level has improved about 100 percent and we are absolutely THRILLED! Though she was in the hospital on New Year's eve, I couldn't help but feel fantastic about the promise of the new year. We are off to a GREAT start! We discontinued the Megace when Erin was hospitalized, but it appears that the TPN has the same affect on Erin. She's been eating like a little trooper. At our appointment on Thursday, she had gained a kilo (2.2 pounds) since her last visit. Pretty impressive, particularly when you consider that she only weighed about 45 pounds to begin with!
In spite of everything, I will always remember this past Christmas fondly. At this time a year ago, we had no idea what to expect for the 2005 holiday season. We are truly blessed, and we never lost sight of that through all of the ups and downs of the Christmas season. I guess the moral is, no matter where you spend Christmas, so long as you are together, it really doesn't matter at all.
An update on some of our friends: Terrell (wi/terrell), though doing quite well since returning home in September, has experienced a couple bumps during the holidays. He has an enlarged spleen, and his family is asking for prayers as this could indicate his leukemia has returned. On the flip-side, many things can cause the spleen to be enlarged, so we are confidently praying that this turns out to be nothing more than a side-effect to a recent infection. As you can imagine, his parents are on pins and needles waiting for test results. Please lift this family up in your prayers.
Good news is coming from Whitney Osborne's family (... we knew it would come!). She has improved dramatically, and miraculously over the last week. Please check out her website if you get a moment (mn/whitney). Her condition was grave only a week ago. She has improved to the point where she is almost breathing without assistance, and her renal function is returning to normal. The doctors didn't think it was possible, but we never doubted it would be so. Whitney is amazing on so many levels. God must have very special plans for this young life!!
Tom Neddo's counts are slowly but surely improving. His platelet count is hovering around the 100,000 mark, which is cause for great celebration. His family asks that you keep doing the "platelet dance" (... and the white cell and hemoglobin dance, for that matter) on Tom's behalf. He's making good progress.
And I'd like to add another friend to our list of those to pray for. Nicholas Boggs is a new little friend I have come to know and care a great deal about. Though I've never met he or his family, his story is so touching, and he is such a precious little guy. Please check out his website. (va/nicholas.e.boggs). He's absolutely the sweetest little guy you will ever meet. If you've seen a Hoxworth Blood drive poster recently, you've probably already seen Nicholas (he is featured on their latest posters because he is absolutely impossible to resist!). He is an FA patient with lots of complications, and he's not a good candidate for transplant, which really makes it frightening for his family. They are requesting prayer on his behalf right now, and I think he's an outstanding candidate for a miracle from God. I know that's what I'm praying for.
Blessings to you and your family for a healthy, prosperous new year. We give thanks for each of you daily!
Until next time...
- Barb, Kevin, Jess, Katie and Erin
P.S. -- I forgot to mention that Erin is scheduled to get her first haircut post-transplant tomorrow morning. She's so excited! She's talking about hair gel and highlights. I guess we'll just have to see how it goes. Under the circumstances, I'm inclined to let her try something a bit different this time. I think she's earned the right! We'll let you know how it goes in our next update.
Monday, December 19, 2005 12:12 AM CST
Thanks for checking in on us! We had another crazy week last week. Erin was feeling great, and her energy level was better, too. We had an IVIG appointment on Monday, and a Cidofovir appointment on Thursday. Then, on Friday morning, Erin awoke with a fever of 101.3. Kevin and I were "fit to be tied" (as my Grandma Hafer used to say!). It just didn't make sense after such a good week. It followed exactly the same pattern as the weekend before. Cidofovir on Thursday, fever on Friday. The fever lasts less than 24 hours -- but by that time, you're already committed to a weekend stay at the hospital. Kevin went on-line and did a little more research on Cidofovir and discovered that fever is a pretty common side effect to the medication. Loss of appetite and dry skin are two other common side effects that Erin has had lately. We tried to discuss it with one of Erin's doctors when I called about her fever on Friday, but he made it clear that he didn't think one had anything to do with the other. Kevin and I disagree. The BMT doctors that treated Erin during her hospital stay over the weekend agreed that Cidofovir is the likely source of Erin's fevers.
So, ... we are faced with a difficult decision this week. We have appointments scheduled for Cidofovir each Thursday through the end of the year. Do we go to our appointment this Thursday and risk spending the Christmas weekend in the hospital? (I won't be revealing the answer to that question, lest one of Erin's doctors reviews this website!) Her adenovirus symptoms seem to be much better. We've had two consecutive negative cultures, and we have one pending from this past weekend. Perhaps if that culture comes back negative then we won't have to worry about making a decision on Thursday because these treatments will no longer be necessary. Wouldn't that be a great Christmas present?!
Erin is also back on the Megace (appetite stimulant). Loss of appetite is one of the side effects of Cidofovir, and Erin's appetite has been in a steady decline for several weeks now. When Erin took Megace late last summer, she experienced no side effects whatsoever, so we feel comfortable giving it to her again for the next couple of weeks. Better appetite means more fuel to combat all the little "bugs" that come along at this time of year. The Megace seemed to kick in yesterday, and I have to tell you that it was thrilling to see Erin eat with enthusiasm once again!
So, overall, things are going well and we are very thankful. Once we officially get over the adenovirus, we should be in GREAT shape. Aside from the meds she's taking for the adenovirus (or a side effect to adeno), Erin is only on one medication right now (an anti-fungal medication that she will have to take until the one year anniversary of her transplant). That's pretty incredible considering what she's been through. She's a remarkably strong little girl.
We celebrated Katie's 13th birthday last night. We've had the party planned for some time now, and when Erin was admitted to the hospital last Friday, we just didn't think it was fair to cancel it. It ended up working out just fine as Erin and Kevin got home just as the party was getting started yesterday evening! All's well that ends well. It was a good weekend for everyone.
As you can imagine, the time that we've spent in the hospital over the last several weekends has really put a crimp in my holiday "to-do" list. In spite of my best efforts, no Christmas cards made it to the mailbox this year. I feel really bad about that. This year, more so than any other, I was really looking forward to sending out a note of thanks to all of you who touched our lives this past year.
To all of our new friends who shared the remarkable journey through transplant with us, we want you to know how very special you will always be to our family. We think of your children as our own, and we pray daily for their complete recovery. We celebrate each of their victories, and we experience every bump that they hit. You are always in our prayers, and never far from our thoughts.
To our faithful friends and family who have been with us from the very beginning -- we thank God for you daily. You have been a pillar of strength during a very difficult time. We could not have made it through these past months without your love and support. You carried us when we did simply did not have the strength to carry ourselves, and we thank you from the bottom of our hearts. We are blessed beyond measure by your friendship.
We wish you peace and good health during the holiday season, and in the coming year!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, December 13, 2005 12:24 AM CST
Greetings, and thanks for checking in on Erin. I just wanted to put a quick update on our site since it's been a few days since we've updated. Erin had a good week last week. Her appointments at Children's went very well, and she was spunkier than she's been in quite a while. Her adeno symptoms seem to be improving, and we're really thankful for that. We got hit with a nasty snowstorm last Thursday afternoon. Erin had an appointment in the day hospital on Thursday, so Kevin made arrangements to meet me at the hospital so that I could leave and try to get home in the car before the roads got too bad. No such luck. It had just started to snow when I left the hospital, and after nearly 4 grueling hours in the car, I finally slid into our driveway. What an adventure! Kevin had about the same luck as me -- he and Erin ended up sitting in the truck in the parking garage of the hospital for two hours because the traffic on Burnett was at a stand-still. Anyway, in spite of the bad weather, we all managed to get home safe and sound. Once we were all home together, the snow was actually rather nice!
On Friday morning, Erin started to run a low-grade fever. I decided to give her a dose of Tylenol and see what happened. The plan was: one dose of Tylenol, and if the fever goes away, then I wouldn't call the hospital. Unfortunately, by Friday evening, her temp started to creep back up, so I called and talked to the BMT physician on call. And guess what? We made the drive back to the hospital on Friday evening. I don't know who was more discouraged ... Erin, or Kevin and I. To make a long story short, she ended up spending 48 hours in the hospital, but she never really had a temperature the entire time we were admitted! Her temp was 100 degrees when we arrived in the ER (the hospital doesn't regard it as a temperature unless it registers 100.5 or above!), and it pretty much disappeared altogether by Saturday morning. I was somewhat encouraged, to be honest, because it appears that she was able to fight off whatever was causing the fever on her own. (It's these little victories that mean the most!) So, another weekend of hospital food and the Cartoon Network on TV. Not the way I was hoping to spend the weekend, but we'll take it.
So, that's the latest from the McKee household. We have a special request for prayer today. A very sweet young lady we met in Minneapolis is REALLY struggling right now and is in desperate need of prayer. Whitney Osborne (mn/whitney) had leukemia and went to transplant in Minneapolis earlier this year. She's hit several bumps along her path to recovery, but she's such a fighter that she has overcome some really serious stuff and made it look easy! She's a beautiful girl with a bright, cheerful disposition and a smile that will just melt your heart. She was diagnosed with pneumonia recently and had to be put on a ventilator yesterday. Lung problems are SERIOUS stuff when you are immune-system compromised. We are praying for God's touch on Whitney, and that her lung function would return to normal so that she can get off the ventilator VERY quickly.
Thank you for all of your prayers on our children's behalf. They truly do make all the difference.
Until next time...
- Barb, Kevin, Jess, Katie and Erin
Tuesday, December 6, 2005 9:23 AM CST
Thanks for checking in on Erin. She had another good visit at Cincinnati Children's yesterday. We saw Dr. Davies instead of Dr. Harris. Dr. Davies previously worked with Dr. Wagner in Minneapolis, so it's nice to touch base with her from time-to-time and get a "Minneapolis" overview on things. Erin's lab work looked great yesterday. Her adenovirus symptoms are improving, and Dr. Davies said thats probably the best gauge for determining if we're making any headway against the virus. Her adeno culture from last week came back negative (Yeah! One negative culture down -- two to go.) Overall, she's doing extremely well. Our next task is to begin incorporating some regular exercise into her routine (easier said than done at this time of year!). Right now, the stairs at home are her primary source of exercise. It's too cold to go outside and ride her bicycle or take a walk. We belong to the local YMCA and they have a very nice indoor walking track, but we're still a bit reluctant to expose her to that many people. We're trying to come up with some other ideas. Any suggestions?
Regarding our friends from Minneapolis:
Pending any unforeseen developments, Jordan (ut/jordanbrunson)will be heading home this week! (Yeah Jordan!!) I know he and his family are absolutely thrilled. We wish them safe travels, and a healthy holiday season.
Brian has been released from the hospital, but he is still battling a fever. The doctors are wondering if he might have adeno as well. In spite of the worry that an adenovirus diagnosis brings -- it's a relief to know the source of his symptoms so that they can effectively treat the problem. We pray that they will get to the bottom of things so that Brian can put this behind him and head for a much warmer climate -- HOME!
Terrell is doing remarkably well. Check out the new pictures on his website when you get a moment (ia/terrell). He has resumed school (he is being tutored), and he's ready to resume a dance class that he was taking prior to his diagnosis and transplant. For those of us who were with Terrell this past summer, his progress to date has been absolutely incredible.
Keep Whitney in your prayers right now (mn/whitney). She is such an inspiration to our family. Though I know she must get discouraged from all of the bumps she's hit along this path we call "transplant", she never shows it. She is an amazing kid.
Tommy Neddo just celebrated a birthday. It looks like his counts are beginning to trend upward, which is thrilling to see.
One thing we've come to understand very well regarding transplant is that you have to have faith and patience to get through it. There is no "quick-fix" and few get an easy ride. It just takes time to heal and completely recover. All of these kids would really appreciate your prayers.
As always, thanks for everything you have done for our family this past year. We appreciate each of you more than we can say.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, November 29, 2005 12:46 AM CST
Thanks for checking on Erin! Things are going very well. We ended up celebrating Thanksgiving at Mamaw and Papaw McKee's after all. We got the okay from Dr. Harris to go at our appointment last week. We had to follow a few simple guidelines, but it was worth it. Erin was thrilled to be able to celebrate the holiday the way we normally do. Right now, Erin's life consists of one long list of things that she just can't do yet. She gets discouraged at times, and I feel awful for her. It meant so much to be able to enjoy our traditional family Thanksgiving. It gave Erin a little glimpse of the "normal" life that she is slowly (but surely) getting back to.
Our house looks like we've had a "Christmas explosion" take place. It's a bit overwhelming. In spite of the fact that we're coming off a nice long weekend, I didn't accomplish as much around the house as I had hoped. We did get our tree up and decorated, which was no small accomplishment. Our Christmas tree is 9 feet tall, and we probably have a thousand ornaments on it (barely an exaggeration). Anyway, it always turns out beautiful, but it's an all-day project getting the tree decorated. The girls are great helpers for the first 25 minutes that we decorate. From then on, I'm pretty much on my own! (Ha!) I don't mind. I actually really enjoy putting up the tree. We brought up all of our other holiday decorations from downstairs, but we haven't had the time to get them put up (... hence, the "explosion" effect referenced above). I'm trying to work on things a little each evening. We're getting there.
We took the girls and went to Corsi's Christmas Tree farm over the weekend. It was a cold, windy Saturday, but you would be amazed at the number of families who showed up for what I assume must be an annual holiday tradition -- the cutting of the family christmas tree! It really looked like fun but I think this year, more than ever, a live tree in the house would be a big no-no. We were actually looking to purchase several spruce trees to plant in our yard. We ended up selecting three trees -- one tree for each of our girls. It was a fun (cold) outing, but the trees really look nice in the front yard. Who knows -- maybe next year we'll go and cut our Christmas tree (... but only if Santa brings me a heavy-duty vaccuum cleaner to pick up all the pine needles from the carpet!).
Erin's already got her letter to Santa written and ready to mail. Among other things, she asked Santa to help her stay out of the hospital during the holidays. She has been REALLY good this year -- so Santa, if you're reading this -- we'd really appreciate if you could fulfill that request for her! This year especially, I'm such a pushover when it comes to her. Thank goodness she didn't put a pony on her Christmas list. Kevin would have killed me!! HA!
Well, that's the latest from our little corner of the world. We're all doing well. Our prayers are with our friends who are hospitalized, or still recovering away from home right now. It's tough under any circumstances, but it's got to be especially hard during the holidays. For several of our friends, the best present they could get this year is the okay to head home! Truthfully, though, the gift we all want more than anything is a healthy child. I'd trade anything in the world, and never ask for another thing, if God would grant me that one wish. I know He's working on it. (Thank you, God!)
Hope everyone had a great Thanksgiving. Happy Holidays!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, November 21, 2005 10:43 AM CST
Greetings from home! Just wanted to let everyone know that Erin was released from the hospital Saturday. She's still running a low-grade fever off and on, but we think we've finally figured out the source of the fever, so the doctors finally felt comfortable letting us leave.
Our Cincinnati Children's doctors went ahead and did Erin's 6-month bone marrow biopsy while we were hospitalized last week. In addition to sending Dr. Wagner what he needed for her 6-month check-up, they also did some analysis of the marrow themselves and discovered that her marrow tested positive for the parvo virus. This explains a lot of the symptoms Erin has had recently, including the fevers (which were most worrisome). They also gave us some very good news from the preliminary biopsy results. Our doctor told us that Erin's biopsy slides looked completely normal, and that if she had not known ahead of time that Erin was a transplant patient, she would never have known from her slides. Everything looked healthy and normal. We were thrilled to hear that! Regarding the parvo virus, it is treated with the same medications we are already giving Erin for the adenovirus, so hopefully these meds have already started to work on the parvo. Her adeno symptoms are much improved so we finally feel like we're getting ahead of that virus.
So, in a nutshell, we're doing great. Having everybody under one roof again over the weekend was fantastic. (We were beginning to forget how that felt!) We have much to be thankful for this holiday season.
We're planning on having Thanksgiving dinner at home this year (... a first for us! Wish us luck.) After debating how we would handle Thanksgiving, we finally decided that we just didn't want to take any chances so soon after Erin was released from the hospital, so we think we'll just celebrate at home and invite the grandparents over for dessert later in the day. Even though it's not what we would normally do, we feel so blessed to be together and we're really looking forward to the holiday. I can't think of anyplace I'd rather be, or any people I'd rather be with this year.
As I reflect back over the last year, it really has been a year full of blessings. I had no idea when the year 2005 started what was in store for us (... perhaps that was a blessing as well!) We've weathered a lot of difficult days, but overall, it's been a year of miracles and answered prayers. We have met some absolutely amazing kids (with extraordinary parents) and some of the kindest most compassionate medical professionals you can imagine. We are also thankful for the countless people who helped us through all of the difficult days. This Thanksgiving will be especially profound to our family. We are thankful beyond words.
We'd like to wish all of our friends, new and old, a blessed holiday season. You are always in our prayers, and among the things we are most thankful for.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, November 17, 2005 5:56 PM CST
Good evening and thanks for checking in.
We were due to be in MN today for our 6 month checkup but unfortunately, Erin is STILL in the hospital here in Cincinnati. Sounds like we aren't missing anything in MN as they're getting some REALLY cold weather and in WI, where ours friends the Neddos live, they got enough snow to close schools. It's getting cold in Cincinnati, but not to this extreme.
Erin is actually feeling pretty good but continues to have a re-occurring fever that comes and goes every 3-4 days. Apparently not responding to the variety of antibiotics they've had her on, the fever has been just enough to keep us in. All of Erin's counts continue to look very good (WBC-12.9, HGB-10.0, platelets-424000 CAN YOU BELIEVE THAT!!, ANC-7.87). Her appetite has been good. All in all, she doing great.....except for this fever.
Erin was diagnosed with adenovirus several weeks ago which accounts for her stomach problems. She's taking treatments of IVIG (antibodies) and Cidofovir (for the virus). They did CT Scan and an endoscopy (upper & lower) and found that she had several ulcerations in her large intestine, again typical with the adenovirus. All other areas were clear. But the fever is not typical with adeno. So we continue with the antibiotics.
In rounds yesterday, Dr. Harris decided that he wanted to proceed with a bone marrow biopsy to get additional data as to the cause of the fever and rule out infection in her marrow. He also recommended a white blood cell scan. This is some remarkable technology where they draw blood (~40ml) and send it to the lab where they separate out the white cells. They treat the white cells with a nuclear isotope that places a "tag" on the cell. They then infuse the "tagged" white cells and wait several hours while they circulate throughout the body. Since the job of white cells is to fight infection that enters the body, these "tagged" white cells will move to the area(s) of infection and show up on a high-definition laser scan. This IS rocket science at it's finest.
We should have preliminary information from the biopsy tomorrow, with the remaining engraftment information due next week. The white cells scan revealed that she had one small concentration of these white cells where the small and large intestine join. Our BMT docs will be meeting with the GI (Gastrointestinal) docs tomorrow to review all their info from the endoscopy. We'll see what they conclude tomorrow, coupled with the biopsy data, we should have a plan to move forward very soon and get this under control.
Tonight, please keep Erin in your prayers. That the doctors get a handle on the treatment and Erin will be able to be discharged very soon. We're praying at this point that she's out by Thanksgiving. Either way we have SOOOOOO much to be thankful for this year. God has been so faithful to meet our every need. We also ask that you remember all those still on their journeys, Jordan who is doing really well, Brian who hit a few bumps but we pray is back on course, Terrell who is doing well and is still a incredible little guy, Nate who is doing very well, Sidney is doing well, Tommy who has had his share of bumps but keeps fighting forward (keep it up Tommy), and Whitney, Devin, Jared and all the others. Each one is so special and we are blessed to have met them and going through this together. Most of us are separated by miles now but we all continue to stay in touch though our web sites.
We want to wish each of you a very Happy Thanksgiving. Please take some time in the coming weeks to reflect on all the Lord has provided for each of us. We serve an awsome God!!
Our Love to all...More as it becomes available.
-Kevin, Barb, Jess, Katie & Erin
Sunday, November 13, 2005 5:13 PM CST
Happy Sunday! Thanks for checking in on us today. Our roller coaster trip here at the hospital continues -- but it looks like the big hills are behind us! We were hoping to get out today, but yesterday's labs revealed that Erin's white count was sky-high again (20). A high white counts means that infection is going on somewhere, and fever isn't far behind. The doctors had taken her off all antibiotics in anticipation of us going home today, but they put her back on two antibiotics, and by this morning, all of her counts were back in the normal range. (Yeah!) The doctors seem to think we are finally making some progress against the adenovirus. Erin is feeling much better, and she looks good too. The plan now is that they will continue to give Erin IV antibiotics through tomorrow, and then monitor her on Tuesday to see what her white count and temperature do. If we remain fever-free, they will release us on Wednesday with a prescription for an oral antibiotic to finish up at home. Not too bad. We're also expecting to get results from her endoscopy biopsies tomorrow. That will be helpful long-term in treating her stomach pain.
It's hard to believe that Thanksgiving is only a week away. This year has really flown by in some regards (... and dragged in others!) We're all looking forward to a visit from Uncle Kelly this coming week. Originally, we were going to be in Minneapolis for Erin's 6 month check up later this week and we were not going to get to spend much time with him. If there is a silver lining to this hospital stay "cloud", it's that we will get to see Uncle Kelly during his visit. We're all looking forward to that.
So, ... things are going well. Erin's doctors seem to think we've turned the corner in our treatment of the adenovirus and she should be feeling much better very soon.
As always, thanks for your prayers for Erin's recovery. She's doing well tonight. Please remember our friends who are recovering from transplant also. It's a tough road, but these are tough kids!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, November 11, 2005 8:03 AM CST
Day +184
Just a quick update. Yesterday, Erin had an endoscopy to try to help the doctors get to the bottom of her stomach pain, fevers and other symptoms. They have resisted doing this for a while now and after speaking with Dr. Wagner last week, Kevin and I put on a "full-court press" to get them to schedule it. I think the doctors have gotten all the information they can from her blood work and stool cultures. It was time to try something new. Anyway, the endoscopy revealed that Erin has some ulcer like sores in her large intestine - but no signs of GVH. We were very pleased to hear that. They took some tissue for biopsy and we won't have the results from that until Monday. They may not know exactly what meds to put Erin on until they get the results from those biopsies, but at least we know what we're dealing with now.
As of this morning, Erin has been fever free for 48 hours so I'm anxious to talk to her doctors during rounds. I suspect they'll keep us here until tomorrow morning -- but if we remain fever free, they should be releasing us. I'm not packing my bags just yet. Fevers can pop up at any time without notice (i.e., last Sunday morning!). At least we know what the problem is now. It will be such a relief to get this stomach thing under control. As this has been her only real complaint, Erin should be feeling GREAT very soon.
Please continue to remember our friends from Minneapolis in your prayers. Brian has been hospitalized again, but it sounds like this will be a short stay. He's day +102, so I know he and his family are getting anxious to return home. (I vividly recall how WE felt after day +100!). Jordan is doing well and moving in the right direction. He's even getting days off from the clinic, which is outstanding. Tom Neddo's blood counts are looking better, so please keep doing the platelet dance for him. All of the kids are heading in the right direction -- and praise God for that! 2005 has been a long year for all of us, and we have much to be thankful for.
As always, your prayers for Erin are much appreciated. I think it’s worth mentioning that when we got down to the OR for her endoscopy yesterday, the nurse that would be caring for her turned out to be a friend that used to attend our church! She told Erin that she would pray for her throughout the procedure. It was a pleasant reminder that God was truly watching over her.
Thank you for faithfully checking on Erin, and for your prayers. We greatly appreciate it!
Until next time… (when we will hopefully be updating from home!)
- Kevin, Barb, Jess, Katie & Erin
Tuesday, November 8, 2005 8:20 AM CST
Day 181 (can you believe it's been 6 months!!)
Yes...It's been 6 months. As anybody that been through this can tell you, it's been a journey that has changed our family forever.
Unfortunately, Erin remains in the hospital today (since last Tuesday). The main reason has been a reoccurring fever. It'll go away for a few days, spike to 101-102, then go away for a few more days. At this point, we're not sure if is a result of the Adenovirus or if there's another source of infection/virus that is causing this. So far, all cultures have come back negative.
Since she is still experiencing viral symptoms, the doctors gave her one dose of Cidofovir, which is an antiviral drug to help disrupt the virus and enable her system to fight it off. They also have her on two different antibiotics just in case there is some bacterial infection that isn't being picked up on the cultures. Of course the antibiotics will do nothing to help if it is the virus. As of this morning, she continues to run normal - ~99 degree temperature.
Since Erin's transplant, her only consistant complaint has been problems associated with her stomach. As a result, the doctors in rounds this morning have decided that they are going to request that some GI (gastro-intestinal) doctors take a look at Erin and possibly perform a endoscopy. Barb/I are hoping they'll decide to do this and know what exactly is going on in there. Even though we're 6-months out, we always have the fear of GVHD (graft-vs-host disease) in the back of our minds. The endoscopy could possibly include a biopsy of the area.
We're currently slated to be back in MN next week for Erin's 6-month checkup. With this hospital stay, we're looking to reschedule that for a later date. The last thing we need right now is to be in MN, Erin spike another fever, and we end up in the hospital there for a week. Better to get this thing under control now and then make our trip north (hopefully before the snow gets too deep!).
That about it from our side. Please continue to keep Erin in your prayers as well as all our friends from MN (Terrell, Nate, Sidney, Jordan, Brian, Tommy, Whitney, Devin and others). Our prayer is that the Lord will heal Erin of the cause of this fever or He will direct the doctors to find the cause. Either way, WE know that He is in complete control.
Until later....Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Monday, November 7, 2005 7:21 AM CST
[Journal Entry for Sunday, Nov. 6]
Greetings, and thanks for checking in on Erin tonight. We're still here at Cincinnati Children's. We thought for a while that we'd be getting released this morning, however, during her 8am vitals we discovered she was running a temperature of 100.8, so that put the kabosh on any hopes we had of leaving today. I'd be fibbing if I told you that Kevin and I were not disappointed -- but after having the day to think about it, I think we both agree we were really glad we were still here when her temperature spiked. Nothing is more frustrating that going home, only to have to return to the ER 48 hours later with a temperature (... trust me. We've done that twice now in the past two weeks!).
The doctors discontinued her antibiotics yesterday because she had been fever free since very early Thursday. Apparently, whatever is causing her fever is responding to the antibiotics. So, when her temperature came back this morning, her doctors decided to put her on a 10-day rotation of the antibiotic (to be taken at home after her release). I was happy with their decision. Even though we have not been able to identify what exactly is causing the fever, it's apparent that the antibiotic is helping at some level. As of this morning, her doctors told us they wanted her to remain here one more day, and they would re-evaluate her tomorrow morning for possible release. Her fever persisted into the afternoon, but as of this evening, she's fever-free (she's received two doses of the antibiotic so far today). I'm keeping my fingers crossed that she has a restful, fever-free night tonight.
She also received a new medicine yesterday to help fight off her adenovirus. She still has some adeno symptoms, and the doctors decided in their meeting on Friday that they wanted to try using another medicine to see if it helps knock out the virus. The IVIG doesn't seem to have done much in the way of eliminating the virus so far, so we agreed to allow them to give Erin a dose of Cidofovir yesterday. Before we gave the okay, however, we called Minneapolis and spoke with Dr. Wagner. He said Cidofovir is typically used to treat adenovirus in the blood, but it has been used with some success treating adeno of the "gut". He said it was worth a try. What we are being told is that adenovirus of the "gut" is more of a nuisance than a real threat to Erin. It's just a matter of getting rid of it. It's not a quick, easy thing to kick. Hopefully, we will see some results after one dose of the Cidofovir. It's a pretty toxic medicine, and I sure don't want to be giving it to her often.
Other than that, she's really doing quite well. Her counts are all very good, and her doctors are pleased. One of her doctors told me today that he thinks she's had the adenovirus for a while. He said he suspects it might have been the real culprit when she was admitted back in September for what we thought was a gall bladder issue. I'm just anxious for the stomach issue to go away. That has been her only complaint since she was released from the hospital back in June -- but it's been a consistent complaint. If we can kick this, we'll be coasting. I'd be thrilled, and I know Erin would be thrilled too.
So, ... that's the latest from this end. We're still hanging out here at the hospital, but Erin's nurses are great and it really hasn't been that bad. Kevin, Katie and I all managed to get our flu shots over the weekend. It was a relief to get that over with. Even though there is no shortage of the shot this year, I was still really anxious to get it. Both Kevin's company and my company were planning on offering the shot this past week, and both companies postponed it because their supplier didn't have enough of the vaccines on-hand to offer them yet. My company rescheduled for mid-December, but I just didn't feel like I wanted to wait that long to get it. Now, we're covered and I'm relieved.
Our trip to Minneapolis is up in the air for the time being. Erin's doctor's here suggested that we wait about a week or so and see how Erin is doing before we decide whether or not to cancel the trip. If she's recovered well and feeling good, we'll be heading north on the 16th. But if she's still on this "adenovirus" roller coaster, we may delay the trip. I would hate to end up hospitalized in Minneapolis because Erin developed a fever while we were there. And honestly, we want that visit to go without a hitch. I want her to be feeling good when we go back. If postponing our trip by a couple of weeks will result in a good visit, then we'll postpone it.
That's the latest. Thanks for checking in on us. Please continue to keep our friends from Minneapolis in your prayers. Jordan seems to be doing better, and we're all thankful for that. If things continue to look good, he'll be heading home later this month. Brian has recovered nicely after a scare last week. We can relate to Brian's journey very well. When things have gone pretty smoothly, a bump at day 90+ is not only discouraging, but it's downright terrifying! Tommy Neddo's counts have improved, and he feeling pretty good. I think I speak for all of the BMT parents when I say that, even when things are going well, you still are always on guard and rarely get a really good nights sleep! Your prayers are appreciated more than we can say.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, November 3, 2005 7:33 PM CST
Day +176 (... hard to believe!)
Greetings, and thanks for checking in on us tonight. Erin had a pretty good day, though she is still hospitalized. Her hemoglobin is down, and that was the primary cause for concern here. There are a number of things that could explain it -- but as usual, we don't know the exact cause just yet. Her doctors have a couple of theories. She has been getting lots of fluids since she was admitted on Tuesday, so they said her blood may be a bit diluted. In addition to that, they've done daily blood draws to check her various levels. The combination of extra fluids, and blood "loss" could result in an unusual hemoglobin count. Another doctor said he believes Erin has a bacterial infection that will show up in the next day or so in her blood cultures. He said that would explain the fever that landed us in here on Tuesday night, as well as the dip in her hemoglobin.
One interesting thing came up today -- when the lab here did a "cross and type" on Erin's blood prior to her transfusion, they could not identify her exact blood type! The reason they could not identify it is because Erin's blood is in the process of switching over to her donor's blood type (Erin was A Negative prior to transplant. Her donor is 0 Negative). I think that's fascinating! Our doctors here had to call Minneapolis and confirm the blood type of Erin's donor before we could proceed with the transfusion this afternoon. I never cease to be amazed and fascinated by this whole process!
Anyway, this evening Erin looks better and feels better than she has in the last couple of weeks. Unfortunately, that's not gonna get us out of here right away. They are going to continue to monitor her over the next couple of days to see what her hemoglobin does. Her heart rate has been elevated recently as well. It could be that she's just got too little blood right now! (That sounds terrible, I know, but one of her doctors suggested it might be the case. She's simply not making it as fast as they are taking it!) That could cause her heart rate to be high. The transfusion she received this afternoon should help in that area too.
On the upside, the doctors treating her are fantastic about keeping us informed as they get test results. They are in and out of our room several times each day. It's reassuring to know they are on top of things.
The Children's Hospital Chaplain came in to visit us today. We met him last week while Erin was hospitalized, and we really like him a lot. He's very patient and kind -- absolutely perfect for children. I thought it was neat that, at the conclusion of our time together today, he asked Erin what she would like him to pray for. Without hesitating, she asked him to pray that her big sister's back would get better. Nothing for herself. I thought that was sweet. She really loves Jess.
Well, that's it from Cincinnati Children's. We're just hanging out. Though we're anxious to get back home, we want to get to the bottom of things before we leave this time. We're tired of leaving, only to have to return a day or two later with a similar problem. This time, I'd like to leave here with some answers. As you can imagine, we'd appreciate your prayers for Erin tonight. We are hoping that whatever is causing her stomach problems, fevers and drop in hemoglobin, would be minor and easily corrected. We would also appreciate you keeping our other friends from Minneapolis in your prayers this evening as well. As Kevin mentioned in his update yesterday, Aaron Fowler passed away last Saturday, after a very courageous battle with leukemia. I know his family would appreciate your prayers tonight and in the coming days.
Until next time...
-Barb, Kevin, Jess, Katie & Erin
Wednesday, November 2, 2005 7:53 AM CST
Day +175
Good morning and thanks for checking in on Erin.
As I write this update, Erin is back in the hospital. She was able to get out last Sunday (30Oct05) afternoon, having been in since the previous Wednesday. Her fever had all but gone away and stomach issues seemed to be getting under control. This was true until we got home from work last evening to find that her fever was back at 103.7. We don't have to tell you that it was very alarming since she showed no symptoms of feeling bad, being very chatty and alert. We headed back to Cincinnati Children's (it seeems to be our home away from home anymore), was admitted for a couple rounds of antibiotics and fluids in the ER, and finally got into her room at ~1:00 this morning.
On the bright side, Erin was out of the hospital long enough that she got to do a little "trick-or-treating" on Monday evening, which turned out to be a beautiful night. A special thanks to Gina and other neighbors on our street that dropped off goody-bags for Erin at our house. Our church family also had a "trunk-or-treat" at the church where several families gathered in the church parking lot to hand out treats. We took Erin up there for a few minutes where she would have minimum exposure. It thrilled Erin to see some of our friends from church since she hasn't been able to return to church yet. Everyone really made over her and she made quite a haul for such a short time (all the better for Mom/Dad since she shouldn't be eating all those sweets!).
Our prayer today is that her doctors quickly figure out the cause of her fevers. We have been so blessed that she has done so remarkably well through this entire process. We pray that her stay in the hospital is short. God is still in full control and these issues will be resolved in His time.
Please continue to remember all of our friends from MN, all those still recovering at home, Terrell is back home recovering from shingles, Jordan is at the RMH and we pray that he gets to go home soon, Brian has been back in the hospital with some stomach ulsers but hopes to be out and headed home soon, Tommy is home making progress but still is in need of our prayers, and continue to remember the Taylor and Fowler families whose children lost their battles with their diseases but won an eternal home free of any more pain. We know that their is not a final goodbye.
Our love to all. We'll keep you posted....
-Kevin, Barb, Jess, Katie & Erin
Saturday, October 29, 2005 3:42 PM CDT
Well, I'm updating tonight from the hospital. Erin's been here since last Wednesday when she awoke with a low-grade fever. As I've said many times before, Cincinnati Children's is EXTREMELY cautious, and they told us to head on down to the emergency room, and to plan on being here for a couple of days. They were right! After spending 7 hours in the ER (waiting for a room to open up on the BMT floor), we've been here ever since. Erin's temperature returned to normal on Thursday morning, but they wanted to observe her for 48 hours after her last fever reading, so we knew we'd be here until at least this morning. Then, during Erin's 4 pm vitals on Friday, they discovered she was running a fever again (100.8). It was, thankfully, a one-time thing and her temp has been normal since then, but we're still here, and probably won't get out until tomorrow afternoon at the earliest. It's frustrating, but just a part of the process as I understand it. We're making the best of it. We have a computer in our room this time, which has been very nice. The nurses make Erin feel like a princess here, so it's really not that bad. I am praying hard that we've seen the last of the fever, and that we'll get the okay to leave tomorrow. We are not miserable here, but it's just not home. In addition to that, there are lots of "bugs" going around right now, and what worse place to be than in a Children's Hospital when everybody is sick!
Please say a special prayer for Erin tonight, that her temperature will remain normal. They are attributing the fever to the Adeno virus they diagnosed a week ago. Some of the symptoms have improved since the diagnosis, so we are really hoping that we're getting in front of it. She's been feeling pretty good overall. Just really bored and tired of being in another little hospital room.
I have to resist the temptation to complain or be discouraged when these things come up. It sometimes feels like we're taking steps backwards when we find ourselves back here in the hospital. Erin has done so well through all of this. These bumps are simply part of the process. When I think about the trauma her little body has been through in the last six months, I'm absolutely amazed that she's in such great shape! Your prayers have been the key to her recovery, I am convinced, and I can't thank you enough for faithfully lifting her up.
Overall, she truly is doing well tonight. I look forward to posting from home tomorrow night!
Please also keep Aaron Fowler in your prayers tonight. He has developed some serious lung complications, and he is fighting for his life as I type this. He is such a special young man. I can't get him out of my mind today. He truly is in need of all our prayers.
As always, thanks so much for checking in on Erin today, and thank you especially for your prayers.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, October 25, 2005 2:07 PM CDT
Sorry for the delay in updating the webpage! Our weekend didn't go quite the way we had hoped or planned. As you know, we have an appointment at Cincinnati Children's on Thursday each week. Erin has been complaining about stomach pain for several weeks now, and we've been trying to get to the bottom of it. They finally took a culture this past week to see if anything showed up, and we got a call Friday afternoon that Erin has the adeno-virus. It primarily affects the stomach and digestive tract, but it can get into the blood, and when that happens, it's very serious for transplant patients. Thankfully, it is not in Erin's blood. To combat the virus, her doctors prescribed IVIG (an antibody infusion to help boost her immune system so that it can kick this virus). This infusion takes about 6 hours to complete, and we had to go to Children's Friday evening for her first round of the medicine. The infusion went well, but when they did Erin's vitals shortly after we arrived at the hospital, they found that she was running a low-grade fever, and that bought us a night in the hospital. Erin was VERY disappointed (Saturday was, as you know, her birthday. The whole reason we went to the hospital Friday night was to try to avoid a visit on her birthday). Her temperature, however, only registered a bit high the one time, and it was normal every time they took it after that. As a result, Erin was released to head home early on Saturday (yeah!). We did get to have a little party for her at home Saturday night, and she enjoyed it VERY much. (She's been doing the "birthday count-down" for about two weeks now. It was heartbreaking when they told her Friday night she would have to stay in the hospital. On the up-side -- she did score a really nice birthday present from the nurses on her floor before she was released on Saturday morning, so it worked out pretty well! (Ha!)) We also had to postpone her baptism until next month. We just didn't feel comfortable pushing things too much while she's still under the weather.
Dr. Harris told us yesterday that he wants Erin to get IVIG two times each week until he gets three consecutive "negative" cultures for the adeno-virus. It's really a relief to finally know what's been causing her stomach pain. That has been her only complaint, but it's been a consistent one, and we feel like we've been trying to shoot a moving target since it started. All of the meds she's on right now can potentially cause stomach pain and/or nausea. The Megace they prescribed several weeks ago caused her appetite to increase tremendously, and we wondered for a while if that might have been the source of her pain. She went from eating practically nothing to eating CONSTANTLY. Anyway -- we finally know what we're dealing with and we're treating it. Hopefully she will be feeling much better very soon. As I understand it, the adeno-virus is very common, and usually goes untreated in most people. You get it, your stomach is upset for a day or two, and it goes away. Unfortunately, it's just not that simple when your immune system is compromised.
So, overall, things are good. I think once Erin's stomach problem clears up, she's going to be feeling great, and I simply can't wait! She's getting bored at home, so we're trying to think of things she can do to break up the monotony of her day. We have a membership at the YMCA, and they have a really cool suspended walking track that very few people use. I'm debating letting her wear one of her lighter-weight masks and taking her to the Y a couple nights a week for a change of scenery and a bit of exercise.
You should see how much hair she has! It's getting to the point where I almost need to get on her case about brushing it again. (She's out of practice!). It's so cute! Kevin is trying to talk her into leaving it short because it's looks so absolutely adorable on her -- but she's determined to have it shoulder-length again. Of course, if she wants it long, then long it shall be! She's earned the right to wear it the way she wants (... within reason, of course! I'd prefer no more "rainbow-striped" hair if we can avoid it.)
That's it from this end. Please keep Aaron Fowler in your prayers this week (mn/aaronf - aaronf/pray4af). He is an absolutely incredible young man who is fighting the battle of his life. His first transplant did not take, and he's been on an experimental medication to fight off his leukemia and give him the strength he needs to go to transplant again (I simply cannot imagine it). His family is devout in their faith and Aaron has even continued to work through his church in an outreach program to help feed needy families in his community -- in spite of his devastating illness. If you get a chance, go to his webpage and read his journal history. You will be humbled by this boy.
As always, your prayers for Erin are appreciated more than we can say. My prayer tonight is that the virus she's fighting will be overcome quickly with the new treatment she is receiving, and that her energy will be restored completely.
Thank you from the bottom of our hearts! You are such great friends!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Saturday, October 15, 2005 5:41 PM CDT
Thank you for checking in on Erin. She had another really good week, and we are thankful! Her creatnine was down to .6 after receiving fluids last weekend, and her clinic visit on Thursday was excellent. We were in and out of the clinic in less than 40 minutes (... a new record at Cincinnati Children's!). Her labs all looked great. Her WBC count was 12.5, her hemoblogin was 12.4 and her platelets were 344,000. I was initially a bit concerned about her white blood cell count. Two weeks ago, it was 6.7. Big increases in the WBC count usually indicates the body is fighting off some type of infection. Our nurse practitioner, Stacy, said she was not concerned. She said the WBC count is always fluctuating, and it could be back down to 7 next week. Her other counts look fantastic. As we've said many times before - - we are amazed and thankful for her excellent lab results.
We're all set for our 6 month follow-up visit in Minneapolis. We'll be heading back to Minnesota on November 16th. As it turns out, all of her tests and appointments can be done in one day, so we'll do our hospital rounds on the 17th, relax on the 18th (and recover from the biopsy they will do on the 17th), and return home on the 19th. We found out last week that Jared will be returning at the same time for his follow-up appointment, so we're hoping to see his family while we're there. Erin is also looking forward to seeing several of her favorite nurses again. I can't say enough about the nurses who took care of her on 4A and in the clinic after her transplant. When you go through something like this, the people who have shared the experience with you hold a very special place in your heart, and the nurses who cared for Erin are the BEST. This should be a good trip. Once we're finished next month, we shouldn't have to return to Minneapolis until next May. Whoopee!
The weather in Cincinnati was absolutely beautiful today! We were finally able to take in a Quakers football game and watch Jessica cheer. It was so much fun! (Check out the new pictures!) Erin was so thrilled to be able to get out of the house for a while, especially to see Jess cheer. If the Quakers had won the football game, it would have been a perfect day! (Ha!) Wilmington is about an hour from our home, and the drive was very pretty. There is no denying it -- Fall is definitely here. The trees are really beginning to change color, and the drive was just beautiful. Tonight, Erin is tired from her busy weekend so far. I think we'll just hang around the house tomorrow and take it easy.
Next weekend we have two BIG events in Erin's life. First of all, her birthday is on Saturday. This year, we're keeping things low-key. I know she was hoping for something a bit more exciting, but we just don't feel like she's ready for that yet. I've purchased some decorations, and her grandparent's will be coming over for cake. Erin is counting down the days. Even though we're not having a big blow-out to celebrate, you can be sure that this birthday will be especially sweet for all of us. I doubt Erin will ever forget the year she was 8 years old! We are looking forward to a GREAT year ahead!
On Sunday, Erin will finally get her request from this past summer fulfilled! She will be baptised, along with Jessica, and maybe even her cousin Matt! While we were in Minneapolis, Erin began to ask us about getting baptised, and she was absolutely determined to do it when we got home. We were delighted to be able to arrange it around her birthday (Erin's request). If you're able to come and share the experience on this special day -- please do! We would be absolutely thrilled to have you there with us. As you can imagine, this is a big day for our family. If you are able to come and need directions, just give me a call or drop me an e-mail. We would love to see you there.
That's the latest from our home. Here's an update on some of our friends from Minneapolis: Jordan continues to struggle. He is still hospitalized and the doctors are still trying to get everything stable so that he can leave the hospital, and hopefully head home very soon. I know his family is weary and exhausted, and they would greatly appreciate your prayers for his recovery. Nathan is home following his 6 month check-up in Minneapolis. It sounds like the visit went very well, and they are awaiting his biopsy results. His central line was removed and he is really enjoying life without that nuisance! Brian continues to do extremely well. His family posted pictures of him playing tennis in Minneapolis (what an amazing kid!). They've also spent some time driving around up north enjoying the fall scenery. He should be getting the green-light to head home in the very near future. I received an e-mail from Jared's mom this week. Since returning home late in the summer, the doctors found some fluid around his heart, and he also had a lung collapse. Please continue to keep Jared in your prayers. We should be seeing his family next month in Minneapolis.
And that's it for tonight! As always, we greatly appreciate your prayers for Erin as she continues her recovery. When we count our blessings each day -- we thank God for each of you!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
P.S. -- don't forget to check the new pictures!
Saturday, October 8, 2005 9:17 AM CDT
Day +151
Thanks for checking in on Erin. We had another good visit at the clinic this week. All of her counts remain in the normal range, except for her creatnine. It was high (1.0) this week, so she's getting some fluids to bring it back to normal (about .50). Our options were trying to get her to drink 8-10 8 oz. glasses of water a day, or get the fluid via her central line while she sleeps at night. We opted for the latter, as I have discovered that I cannot MAKE her drink, any more than I could MAKE her eat. So, ... rather than the weekend being one confrontation after another about her drinking, we decided to do it the easy way. The only downside is that she has to get up a couple of times during the night (... water in, water out). Other than that, things are going great. They wanted us to come back to the clinic on Monday so they could repeat her labs and check her creatnine level, but nobody called us with an appointment time, so I think we're just gonna have to wing it on Monday.
It's much cooler here today, and overcast. It really feels like Fall. Katie is going on a day-trip with the youth group at our church, and they instructed the kids to wear their swimsuits. I'm not sure that's going to be a good idea, as the high temperature today is going to be about 58 degrees! It should be an interesting trip.
We were planning to go watch Jessica cheer this afternoon at a Wilmington home game, but with it being so cool and wet, we've decided it's probably not a good idea for Erin to be out. She is very disappointed. I knew she would be, and I feel awful about it. I was really looking forward to going myself. Kevin and Katie have already been to one of Jess's games, and they said it was great. What better way to spend a nice fall afternoon than going to a college football game! We haven't given up altogether just yet. We're going to monitor the weather for the remaining home games this season, and when Mother Nature cooperates, we'll be there. If not, we may just have to have Jess come and cheer for Erin in our living room!
I also have some very sad news to share. While we were in Minneapolis, we were privileged to come to know the Taylor family. This family was facing some unbelievably hard times, as two of their little boys were born with a genetic disease called Krabbes disease. They both received bone marrow transplants to halt the progression of the disease, and we were notified on Wednesday that their three year old son, Titus, passed away that morning. His tranpslant was not successful, but we never stopped praying for a miracle. Once again, I find myself struggling to understand why these things happen, and also to find words of comfort to offer this family. It is absolutely heartbreaking. Titus has an older brother named Evan who attended school at the Ronald McDonald House with Katie, and a baby brother named Roman, who is recovering from his tranpslant as I type this. This family is strong beyond anything you can imagine and their faith is a testimony to all who know them. I pray for peace and comfort for the Taylor family tonight.
I look forward to the day when I won't have to share any more stories of sadness and heartbreak; when everyone will be healthy and strong; when parents don't have to endure the pain of telling a precious child good-bye (for now). I live for that day.
As always, your prayers for Erin and these other children are appreciated more than you know.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, September 29, 2005 7:12 PM CDT
Greetings! Erin had another excellent visit to the clinic today. Her white blood cell count was 6.7 (remember back in May when we were despairing because it was .2? That seems like a lifetime ago!). Her hemoglobin was 11.5, and her platelets were 293,000 -- all well within the normal range. We continue to be thrilled and amazed by her results.
I cannot begin to tell you how very thankful we are for the family in Great Britian that decided to donate the umbilical cord stem cells from their new baby. The precious new life in their family provided a chance at a new life for Erin. Wherever that family is today, I pray that God is blessing them richly. Our lives have been forever changed by their gift.
In addition to the great lab results, Erin's weight was up today also. We were really thrilled by that! She gained about two pounds over her visit last week. Two pounds doesn't sound like much, but when you're as little as Erin was to begin with, two pounds is a LOT. She looks great and she's feeling good, too.
We saw a different doctor at our clinic visit today, and I can't say that I was thrilled with this guy. His first comment to us (before even introducing himself) was to tell us that he was disappointed that we chose to go to Minneapolis instead of having Erin's transplant done in Cincinnati. Then he went on to tell us what HE would be doing if HE was Erin's doctor (Dr. Harris is attending an FA symposium in Switzerland this week). Kevin and I spent a lot of time researching Erin's illness and all of our options, asking questions and praying. Considering how well Erin is doing today, I feel VERY good about the decision we ultimately made. I was a little bit put off by this doctor. I can't wait for Dr. Harris to get back in town!
I returned to work this past Monday, and it was nice to see everybody at the office again. Though it was hard to leave Erin, being back at work is symbolic that this journey is behind us now, and things are beginning to return to normal. Normal is good. I love my job and my coworkers. The company I work for has been unbelievably supportive during Erin's illness. It's nice to be back. Kevin and I are both very fortunate to work for companies that are very family-friendly. They really came through for us when we needed them.
I have some great news to share regarding one of our little buddies from Minneapolis. Terrell was released to come home this past Tuesday. There was a parade in his honor in his hometown this week, and I would have loved to have been there to see it! Terrell successfully battled a brain tumor at the age of two, only to be diagnosed late last year with Leukemia at the age of 5 (his doctors believe the leukemia might have been caused by the radiation and chemo that he received to destroy the tumor). Anyway, he spent six months in Minneapolis -- most of that time hospitalized. There were many bumps along the way for Terrell, but he continued to fight as hard as any five year old could, and tonight, he's back home in Iowa. He's been through a lot in his five short years. I pray tonight that it will be nothing but sunshine and blue skies for him from this point forward.
That's the latest here. Thanks so much for checking on Erin, and for your prayers on her behalf.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Saturday, September 24, 2005 8:53 PM CDT
Day 136
Greetings! Things continue to go really well for Erin. She's a bike riding fool lately. Today, she and Katie rode to the end of our road to pick up the mail. There is a pretty good size hill enroute to the mailbox, so the ride can be a challenge if you haven't been on a bike much. Regardless, Erin tackled the ride with gusto. She said her muscles are aching tonight. I'm not surprised. I'm so happy that she's getting the exercise. Her little arms and legs are so thin. She's not only lost weight, but she's lost muscle mass as well. The combination of her restored appetite, and her new exercise regime is fantastic!
The Homecoming Parade took place last night. Unfortunately, just moments before the parade was scheduled to begin, a storm rumbled through. I was so disappointed for Katie. The kids worked so hard to prepare for their performance in the parade, and once it began to lightening and thunder, the band director pulled the plug on carrying their instruments in the parade. So the kids just marched through town in a light rain. It was not what Katie was expecting, but I think she enjoyed the evening anyway. Kevin and the other Board of Ed members worked at the concession stand during the game. Kevin said he got to talk to lots of people we have not seen since returning from Minneapolis, and he was so touched by their kind words. It is truly great to be home. We live in such a fantastic community!
Erin and I enjoyed the parade from the home of the Bierly family (great friends and fellow church members). They graciously opened their home to us so Erin would watch the parade from the comfort of their living room, through a huge bay window that overlooks the parade route. It was absolutely perfect! Erin got to see her dad and the other Board members in a snazzy convertible, Katie marching with her friends in the band, and her cousin and several of her good friends on various floats. It was a nice evening. Grandma and Grandpa Hafer came and watched the parade with us.
It sounds like Jess is enjoying college life. We are going to try to take Erin to her next home football game. Kevin said he thinks we can find a seat that will allow Erin to enjoy the game, but be a safe distance from the crowd. Erin is really excited about seeing Jess cheer! I'm looking forward to it, too. If the weather cooperates, we're set to go.
Please remember our friends in Minneapolis in your prayers tonight. Jordan is in desperate need of prayer. His doctors continue to struggle to figure out what's going on with him, and his family is weary. They would greatly appreciate your prayers this evening.
Terrell continues to do very well. Pending the outcome of some tests on Monday, he may get the green light to head home to Iowa on Tuesday (after nearly 200 days in Minneapolis!). As you can imagine, his family is praying for good news next week. The community Terrell lives in is planning a parade for his homecoming, complete with a John Deere tractor ride for Terrell (Terrell's favorite thing in the whole wide world). This is a very fitting celebration for such a brave little boy! You can be sure we will be praying hard for Terrell next week.
Brian has a mild rash that they are treating. Please pray that this rash resolves itself quickly, and does not turn out to be anything worrisome.
Tommy's counts are up some, but the doctors think it may be due to some growth factor meds he is taking. Please pray that his counts continue to improve daily, and that he gets stronger each day as well.
Justin and Aaron continue to be in serious, but stable condition. Their families would greatly appreciate your prayers tonight. Please pray that the treatment they are receiving will be effective, and that they will improve dramatically in the coming days.
Thanks so much for your willingness to lift Erin and these other dear children up in prayer. You cannot imagine how frightening and difficult this journey is. When I think of the word "Hero" now, I don't think about heads-of-state, major league baseball players or television stars. I think about each of these children and how bravely they are battling their illnesses. It absolutely humbles you.
We thank God every day for each of you, and for your prayers on Erin's behalf. We would never be able to get through this without you.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, September 22, 2005 6:49 PM CDT
Greetings, and thank for checking in on us! I thought I'd wait to update our journal until we had our clinic visit this week (which was today). Everything continues to look great. Her counts are all within the normal range. Even her liver enzyme counts are back to normal. The medication they prescribed for Erin earlier this week (to stimulate her appetite) apparently kicked in today. The first thing Erin said when she got out of bed this morning was, "I'm hungry!" It was music to my ears. She ate very well today. (On a personal note, I don't think I'll ever be able to eat another sandwich from McDonald's again. That's all Erin has asked for the last several days, and the thought of another McDonalds cheeseburger makes me want to throw up.)
For the past 4 evenings, Erin has asked to go to the walking path in Bethel so she can get some exercise. The first night, we walked the path together. The second night, she used her scooter (not the motorized kind!), and for the last two nights she's ridden her bicycle. It has been an absolute joy to watch her ride (way ahead of me) on the path. There was a time when I wondered if we'd ever have the opportunity to spend a leisurely evening at the walking path again. Life is so good! We are getting more and more glimpses of Erin's restored health, and it is the most amazing thing I've ever experienced. As I puff my way along the path behind her, I just keep repeating in my head, "Thank You God! Thank You God! Thank You God!" You just can't imagine how great it is to see her doing normal kid things again. I realize that we're not done with this journey yet, but I am so thankful to be where we are tonight. We are truly, truly blessed.
I will be returning to work on Monday. It's kind of a bitter sweet thing for me. I cannot wait to get back into a relatively normal routine again, and I really miss my friends at the office. But I also know it's going to be extremely tough being away from Erin. Since we've been home, I've been away from Erin two times during the day, and both times, I was anxious the whole time I was gone (I kept checking my cell phone to make sure I had not missed a call!). The fact that she's doing so well will make it much easier on me.
Tomorrow is Bethel's Homecoming parade. We're all looking forward to it. The Bethel football team is having a fantastic year so far, so there is a lot of excitement surrounding the parade and the game. Katie was invited to march with the High School Band in the parade (she plays the flute). She's pretty excited about that. She'll also get to sit with the band in the stands at the game. She's excited. Kevin will be in the parade with the other members of the Board of Education. Erin and I are trying to figure out where we can go to avoid the crowds, but still be able to see the parade. We'll figure something out.
I guess that's it for tonight. There are several BMT kids in Minneapolis who are having a tough time right now, and could really use your prayers tonight. Jordan has been hospitalized again with fever and other issues. The doctors continue to treat the symptoms, but they are having a tough time figuring out what the source of the problems are. He is very discouraged and in need of prayer. There are two other boys who are really struggling tonight. I never met their families, but I feel connected to them through our shared experience. Please remember Aaron Fowler (mn/aaronf/pray4af) and Justin (mn/justin). Please also remember our other friends as they continue to recover from their transplants: Terrell, Tommy, Sidney, Nathan, Brian and Devin. I know their families would really appreciate your prayers on their behalf.
Thanks for your prayers for Erin's full recovery. You will never know how much we appreciate them!
Take care and God Bless. Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, September 15, 2005 7:34 PM CDT
Day +130ish (one of these days, I'll get out my calendar and get the exact date!)
Thanks for checking on us tonight. Everything is going well in the McKee household. Erin's blood pressure has remained normal through all of the "checking" earlier this week. I think we've all come to the conclusion that our Home Care Nurse's equipment was not calibrated properly. At our clinic visit today, Erin's blood pressure was perfect, and her counts were excellent. Her liver enzymes (which were elevated last weekend) are still higher than normal, but they are moving in the right direction and our doctors at Children's are happy with them. The only concern they have now is Erin's weight. Her weight has continued to drop in spite of the fact that her appetite has been pretty good over the last several days. The doctors said her weight loss this week is probably due to the sickness she had that put in the hospital last weekend. We are going back to the clinic on Monday to get her weight checked. If it's up, ... we're off the hook for now. But if it's down, they are going to start her on a medication designed to stimulate her appetite. Anyone who knows Erin will tell you that, even before her transplant, she didn't have much excess weight. Now, she's a little waif. We're trying to think creatively about how to get her to eat more. She's never been a big eater, and she's not overly fond of sweets, so it's a challenge to find something fattening that she will eat. If given a choice, most times she would choose fruit or salad over another form of snack (... You're probably wondering how this could be a child of MINE. I wonder the same thing!) Anyway, I've been nagging her about her eating for several weeks now. I think hearing it from her doctor had more impact today. We'll see how she does over the next several days. She's been pretty cooperative today and has eaten pretty well.
We had a nice visit from our Pastor and his family tonight. It's just so great to be home, and to get to visit with friends again! We're still being cautious about going anywhere. Erin's getting a bit stir-crazy staying at home. Aside from daily trips to pick Katie up from school, and weekly trips to the clinic downtown, she really hasn't been anywhere. I am so thankful we have begun her tutoring. She LOVES it! Homework is a treat for her (... right now, anyway). She really looks forward to the days when Ms. Bowen comes. Without coming right out and saying it, Erin has implied that I am a real snooze to be around. I'm trying not to take it personally. When I try to tell her how totally cool I think naps are, she just rolls her eyes at me. (It is virtually impossible to convince a child that naps are fabulous. Like everything else, you don't appreciate a good thing until you no longer have it! We'll revisit the subject of naps when she's 40 years old, and I'll finally get the last laugh!)
Well that's about it for tonight from our end. We continue to lift all those families that we met in Minneapolis in our prayers every night. Please remember Terrell, Tommy, Brian, Jordan, Nate, Sidney, Whitney and all the rest. These families have become such a special part of our lives.
Until next time....Our love and prayers to all.
-Barb, Kevin, Jess, Katie & Erin
Monday, September 12, 2005 5:20 PM CDT
Day 123ish
Thanks for checking in on us! I'm sorry we have not faithfully been updating the website, but until just recently, there really wasn't much to report. Our clinic visits have been pretty uneventful, which is something to be thankful for! We had a visit last Thursday, and all of Erin's labs looked great. Her EBV count remained at zero (yet another answer to prayer!). Unfortunately, she awoke very early on Friday morning complaining of pain in her chest and her back. After speaking with the BMT doctor on call at Cincinnati Children's Hospital, we decided to take her to the emergency room for some preliminary tests to see if we could determine the source of her pain. After about 4 hours in the emergency room, the doctors concluded that the pain was either muscular, skeletal or gastrointestinal in nature, and they released us to go home with a prescription for Tylenol with codene (spelling?). Anyway, Erin was hungry when we got home, but she got sick immediately after eating, and then several more times.
To make a long story short, we wound up back in the emergency room Friday night, and ended up spending the weekend at the hospital. Lab work done Friday night showed that her liver enzymes were elevated (they had been normal at our clinic visit the day before). They gave her fluids and did an ultrasound of her liver, and they determined that she has sludge in her gallbladder from all of the meds she has been taking. That sludge has formed a mass that is moving around and has the potential to block the duct in her gallbladder (probably the source of her pain on Friday morning). It was a relief to learn that her elevated counts and pain were due to something relatively minor and easily treated, rather than GVHD or infection. She never did develop a fever and we were released from the hospital on Sunday afternoon. Overall, it wasn't a terrible experience. We were thankful for the diagnosis we got!
Then, this morning, Home Care from Cincinnati Children's came to the house to review some supplies they had shipped to us, and to do some teaching on how to change Erin's C-Line dressing (this is something we've seen done a hundred times at least, and I've already done it myself a couple of times. I just thought I'd humor them and let them come out and show me their way of doing it at Cincinnati Children's). When the nurse took Erin's blood pressure, it was elevated, so she called Erin's doctor at Cincinnati Children's, ... and guess what? We made yet another trip to the hospital late this afternoon. I thought it was odd that her blood pressure would be so elevated today, when it had been completely normal the entire time we were in the hospital over the weekend. When they checked it again this afternoon at the clinic, it was within the normal range and they sent us home. Tomorrow, we'll be going to the CCHMC clinic in Eastgate to get her blood pressure checked yet again, just to be certain there is nothing brewing. I am praying hard that everything will look good tomorrow. We've have been to Cincinnati Children's Hospital every day now for the past five days. They are all super nice people, but frankly, I'm ready for a break!! I will try to update the webpage tomorrow after our trip to the lab.
Other than that, there's nothing exciting to report. The temperatures here are creeping up, up, up. I think we got spoiled by the fall-like temperatures in Minneapolis. It's taking me a while to adjust back to Ohio weather! Speaking of Minneapolis, it sounds like our friends there are all doing well. Jordan was released from the hospital late last week (I'm sure he and his mother were overjoyed!) Brian continues to do very well. Tom Neddo is improving after a really tough week last week. Things turned around for him late in the week, and we are praying that everthing is going well for him now. He is a tough boy, and he has a very strong family supporting him. Please keep him in your prayers this week. Terrell has been out of the hospital for over two weeks now. I'm hopeful he's getting stronger every day. I understand he has begun school with a tutor at the Ronald McDonald house. I'm sure that has been very exciting for him!
Speaking of tutors, ... Erin began her school year with a tutor in our home last week. Our tutor, Denae, is yet another answer to prayer for our family! She is absolutely perfect for Erin, and Erin is already crazy about her after only two tutoring sessions. It is going to be a wonderful year for Erin. We are so blessed!!
Well, I think that's the latest from our end. With God's help, I'll be reporting tomorrow that her blood pressure remained normal with no follow-up required. As always, your prayers are appreciated more than we can say.
It's all systems "Go" for Erin's baptism next month. We are all looking forward to that celebration.
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, September 5, 2005 8:21 PM CDT
Greetings, and thanks for checking on us. I just thought I'd take a moment to bring everyone up-to-date as Erin continues to recuperate at home. As I mentioned in my prior update, our visit to Cincinnati Children's Hospital went very well last week. We got the results from her EBV lab work on Friday, and her EBV cell count was ZERO (praise God!). I don't think our doctors in Cincinnati believed that the EBV virus was truly in remission. They told us at our appointment that Cincinnati and Minneapolis process that lab work differently, and Cincinnati is more precise when it came to interpreting the results. (i.e., Minneapolis regards any lab results of 500 or less as a "Zero" result. Cincinnati would aggressively continue to treat the virus with a count of 500 or less.) I believe our Cincinnati doctors expected Erin's EBV count to be closer to 500 than 0. Dr. Harris told us that he would be VERY surprised if Erin did not require more Rituxin because her EBV cell count was very high when she was diagnosed. I'm absolutely certain he was confounded by her lab results last week. Kevin and I were delighted by them, as you can imagine!
Our weekend started off pretty good. Erin got to spend some time with two of her very good friends that she has missed terribly. Her friend Kiley came over on Friday evening for a couple of hours, and her friend Sarah came over on Saturday. She was thrilled to be able to spend time with these friends again, and I was thrilled for her. But her stamina is just not quite back to normal yet, and by Sunday, she was paying the price for her busy weekend. She ran a low-grade fever on Sunday, and she vomited several times. I truly thought we were on our way back to the hospital (her temperature got to 100.4 before it started to back off). I had packed our overnight bags just in case. Thankfully, her temperature returned to normal by this morning, but I can still tell she's not completely over whatever she had. Her stomach is still bothering her, and she's not eating much. She actually seemed a bit better this evening, so I am hopeful that we've put our first fever episode at home (post-transplant) behind us.
Kevin is going out of town tomorrow for a brief business trip. Erin absolutely hates it when he's gone -- even if it's just for a day or two. She's such a daddy's girl! Whenever he's gone, things get very "weepy" around our house at bedtime. In some ways, it's quite sweet and tender, and in other ways, it's hilarious. Erin used to carry around a postage stamp sized picture frame with Kevin's photo in it whenever he traveled. She'd take it to school and set it up on the corner of her desk, so that she could moon over him all day at school. It was so cute! I hope she handles this trip well. I'm a little bit anxious myself because of her illness over the weekend. I'm just hoping and praying that Erin will be fine tomorrow morning, and that things will go smoothly while daddy is gone.
We have our next appointment at Cincinnati Children's on Thursday morning -- EARLY. We have to be there by 7:15 am for a CT scan, followed by our weekly visit with our doctors. Joyce is going to go with me to this appointment while Kevin is gone. For some reason, I still find Cincinnati Children's to be a very intimidating place and I dread when I have to take Erin by myself. Perhaps that's because Erin was diagnosed there and that was such a traumatic time for me. Regardless, this should be another pretty simple visit.
Tonight, we continue to pray for Erin's continued healing. It was great getting back to church this past Sunday. Kevin and I are taking turns staying home with Erin on Sunday mornings. This was my Sunday to go to church, and it was wonderful to be back! Our church family is second to none when it comes to taking care of its members. We wanted for nothing while we were gone, and our family was lifted up in prayer constantly. We are so blessed!
Regarding our "extended family" in Minneapolis: it looks like Jordan may be released from the hospital this week. I know how anxious he and his family are for this to happen, so we will be praying extra-hard that everything works out for them. Brian continues to do well. He is making regular trips to the clinic, and it sounds like he and his family are getting in some exercise time, too. Way to go Brian, and keep up the good work! No update on Terrell. I'm hoping and praying that no news is good news. I know the computers were down at the RMH when we left. Perhaps that is the reason his webpage has not been updated. We are keeping Terrell in our prayers, as always.
Thanks so much for checking on Erin tonight. She continues to do well, but the fever she had yesterday was a little bit scary. I'm praying tonight that whatever caused her fever has resolved itself, and now she has some new antibodies in her system to help keep this bug away the next time it comes around. We are still tapering her CSA, with no apparent side affects at this point. We are VERY thankful for that!
Jess is enjoying college life. She's able to come home on the weekends, and that makes it very nice for her. She cheered at her first college game on Saturday, and Erin was REALLY unhappy that she wasn't able go! The weather was absolutely perfect on Saturday, and it was a great day for a football game. I hated to miss it. We're hoping that Erin will be able to take in a home game very soon. It will be so cool to see Jess cheering at a college game! It's hard to believe she's in college already!
Well, that's it for now. We'll try to update the journal again this week. As always, we appreciate your continued prayers for Erin's complete recovery more than we can say!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, September 2, 2005 2:25 PM CDT
Day 10_? (I'm losing count!)
Thanks for checking on us today. All is well in Ohio. Our appointment with Cincinnati Children's Hospital was postponed from Wednesday to Thursday because we wanted to meet with both doctors Erin was seeing before we left for Minneapolis (Harris & Schore), and they were not available together on Wednesday. Turns out it was a very good visit. Her counts were good. Her white cell count was down a bit, but still well within the normal range. Her hemoglobin was about the same as our last clinic visit in Minneapolis, and her platelet count was up to 183,000. Dr. Harris was pleased with her counts. We will be going back to the clinic next Thursday. They are also working on getting a CT scan (that Dr. Wagner requested) scheduled for the same day. Cincinnati will continue to monitor Erin very closely for the EBV virus over the next several weeks. It sounds like Cincinnati takes a more aggressive stance on when they treat the virus, and when they simply monitor it. Dr. Harris told us that Minneapolis regards any EBV test result that is 500 or below as "Zero", but Cincinnati will monitor, and administer more of the Rituxan medication, if her count is not at zero or clearly trending downward -- even if it is below 500. While I dread the thought of her requiring another dose of Rituxan, we want this virus GONE. We are hopeful that the lab results from the test they ran yesterday will be very good. Dr. Harris said her EBV test result was very high when the virus was detected in her system several weeks ago. He said it would surprise him if one dose of Rituxan was sufficient to wipe out the virus. Considering our trip through the transplant process thus far -- I wouldn't be surprised if we kicked it with one treatment. Erin's recovery has been surprising every step of the journey.
Kevin returned to work on Wednesday. He said it was nice to be back. His company was incredibly supportive as we went through this process, and we are very grateful. We are both fortunate to work for outstanding companies. I am hoping to return to work at the end of this month. We are working on getting everything set up at home for Erin's medical follow-up and her tutoring schedule for school. We met with her principal earlier this week, and we are hoping to begin her tutoring in the next week or two. I think Erin is going to enjoy getting back to her schoolwork. She has always enjoyed school, and I think she misses not being a part of it this year.
Other than that, there isn't much to share. Kevin and I are in the process of getting caught up on all the projects we normally would have tackled over the summer months (yardwork, projects around the house, etc.). We brought a lot of stuff home from Minneapolis with us, and I've spent the last several days just moving piles of "stuff" from here to there. It's been very frustrating! My goal is to get everything organized and orderly before I return to work in a couple of weeks. As a last resort, we may resort to having a big bon fire in our backyard in a couple of weeks! (HA! I'll keep you posted!)
I have nothing new to report from our friends back in Minneapolis. I am hoping that no news is good news. As always, we appreciate your prayers for all of these children. We'd also appreciate your prayers for Erin's continued recovery. As I mentioned earlier, we are praying that her EBV test result from our appointment yesterday look great. She's eating well and her energy level seems better. We are thankful for that.
We'll update our journal as we have more news to share. We will share her EBV results when we get them. I was expecting a call from the hospital today. Once again, no news is good news!
Jessica is cheering at her first college game tomorrow afternoon. Kevin and Katie are going to try to go to the game. Erin and I would LOVE to be there, but I think we'll wait for a home game later this season. It will be so exciting to see her cheer at a college game! We can't wait!
Thank you so much for faithfully checking on us. We are doing well, and we thank God for watching over Erin through her treatment and amazing recovery!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Monday, August 29, 2005 7:53 PM CDT
Day 110 (I think!)
This could be one of my longer journal entries, so if it turns out that way, please accept my apology ahead of time!
Greetings, and sorry it has taken us so long to get this webpage updated!! We changed internet providers and had to get everything set up again after we returned home. In addition to that, there has been a flurry of activity at our house, and we've just been exhausted (... in a VERY good way!). It is absolutely AWESOME being home again. While at times it felt like we had been in Minnesota forever, once we pulled into our driveway, it felt like we had only been gone a couple of days.
Tonight, we just feel blessed beyond our wildest dreams. Erin is doing amazingly well. Her appetite has been incredible, and she's got more energy than she's had in months. We were so disappointed that we did not get to share the news of our release last Thursday. It was one of those times when we wanted to race back to the Ronald McDonald House and go immediately into the computer room and do an update to our journal. I suppose it was just not meant to be. We appreciate Grandma and Grandpa McKee sharing the news for us. We were anxious to get the word out!
Our drive home on Friday was long, but pleasant. Ironically, Kevin's truck got hit in the parking lot of the Ronald McDonald House on Thursday evening (while he was packing it for the trip home!) I had to laugh (... unfortunately, Kevin didn't find it nearly as humorous as I did). That truck has literally been sitting in the same parking space for 4 solid months with nary a scratch. Then, within a few hours of our departure, an elderly volunteer who had come to the house to help prepare the evening meal scraped the drivers side door as she was parking her van. I thought Kevin was going to cry. Bless his heart. The good news is, ... trucks can be repaired. If that's the worst thing that comes from our trip to Minneapolis, I'd say we've done remarkably well, wouldn't you?
I have prepared this particular journal entry in my mind a dozen times at least. However, now that I'm actually sitting before my computer screen typing it up, I'm almost at a loss for words. I wish there was a way to acknowledge every single person who made this trip a little easier on us, but there just isn't enough space to do it.
If you sent us a card or posted a message on Erin's website, we thank you. We read every single card and relished every single journal entry. You will never know how deeply touched we were to know that you were thinking about us, and praying for us. Often, those notes and messages were the absolute best part of our day. We laughed, we cried, but mostly we thanked God for the wonderful friends he has given us.
If you sent Erin or Katie a gift, we thank you. We never ceased to be amazed by how perfectly timed these little surprises were! Some of Erin's brightest moments in this journey came when she received an unexpected treat or surprise. I can recall an "emergency" phone call that I received from Erin while she was still in the hospital, and I had run back to the Ronald McDonald House to do a load of laundry. When I answered the telephone in our room, she told me I needed to get back to the hospital IMMEDIATELY. It absolutely scared me to death! Turns out she had received a surprise package that she was so absolutely thrilled with, she couldn't wait for me to see it. There were many such experiences for her during our time away. You made her day over and over again, and we thank you.
If you said a prayer for Erin, or for any of our family, we thank you. As I have said many times before, your prayers are what sustained us during some of the darkest days of our lives. We had an amazing team of physicians and some of the most talented nurses we have ever met, but they were merely "assistants" when it came to Erin's healing. We never doubted for a moment who was truly overseeing her care. We were humbled that you would take the time day in and day out to pray for us, and we thank you from the bottom of our hearts.
If you supported us in some financial way, we thank you. You cannot imagine how frightening it is to know that you are embarking on a journey of unknown duration, with an unknown outcome. We didn't know if we would be in Minneapolis for 3 months, or 3 years! We met families at the Ronald McDonald House who have been there for over a year, and who will probably still be there a year from now. Without your assistance, this trip could have been devastating to us financially. We know that many people gave of their own personal finances in a sacrificial manner, and we are absolutely overwhelmed by that. It has changed the way we look at how we will respond when we get an opportunity to help someone else out in the future. We also received gifts of airline tickets, gift certificates to restaurants in Minneapolis, and even postage stamps! It was extraordinary to be able to focus totally and completely on Erin rather than how we were going to make our house payment, how we would pay for our next meal, or how our insurance premium was going to be paid. For your overwhelming generosity, we thank you.
And finally, if you took care of our dogs, our cats, our home, our yard or our finances (you know who you are!), we thank you! These were incredibly important things to us, and knowing that these things were in the capable, loving hands of such dear family and friends made it much, much easier on us.
I suppose I had better close here. I am due to change the dressing on Erin's central line tonight, and it's already 10:00 pm! We are so thankful for each of you, and so blessed to count you among our friends. We have our next appointment at Cincinnati Children's Hospital on Wednesday morning. We will be posting another update after that appointment.
Please remember our dear friends back in Minneapolis in your prayers tonight. There are still some very serious needs, and every single prayer is appreciated.
We love you!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Friday, August 26, 2005 9:14 PM CDT
Thought we would take a few minutes to let you know that Erin and family arrived home safely at about 5:30 EDT. They were all tired but so very glad to finally be home. They left Minneapolis at 3:15 this morning and had a good trip. Erin was awake for most of the trip, finally falling asleep in Kentucky for just a brief nap.
It was so good to see them. Yes, we had Skyline waiting for them. When we left the girls were playing dolls in Katie's room. There were dolls and doll clothes everywhere.
Again, our thanks to all the prayer warriors who helped to make this day possible. Thanks to Dr. Wagner and all the other doctors and staff at Fairview for taking such excellent care of our girl. And thank you dear Lord for walking beside this family, caring for them every step of the way. Thank you for the miracle!
Kevin and Barb will be writing as soon as they get their internet access up and running. We appreciate your continued prayers for Erin.
Grandma McKee for Kevin, Barb, Jess, Katie and Erin
Thursday, August 25, 2005 8:54 PM CDT
Day +106
What a terrible time for the internet access to be down - again. Wonderful news to be shared and Kevin and Barb can't write, but we're going to shout it from the rooftops, "THEY'RE COMING HOME!!!"
Kevin and Barb met with Dr. Wagner this morning. Erin was and IS fine and she was discharged. They will be following up at Cincinnati's Children's Hospital next week.
Kevin said today was great! Erin's appetite was excellent. She has moved from hamburgers to chinese food and now she is on to chicken nuggets. Tomorrow they will be home and the order is - Skyline! We'll have it waiting.
This has been some journey. But we have shared this journey with many many others, some we've known and some until just these four months ago were complete strangers. We've shared much together. We've shared tears and many anxious moments; we've shared this miracle of healing and we've prayed and thanked God for that healing. We thank each and every one of you who has been along on this journey. We ask for your continued prayers for Erin and for all the other children at the RMH and those still in the hospital. God bless you.
They're coming home! Kevin and Barb will write soon.
Grandma McKee for Kevin, Barb, Jess, Katie and Erin
Wednesday, August 24, 2005 8:12 PM CDT
Day +105
Yep, their internet access is down again. Kevin wanted us to let you know Erin had a very good day. Tomorrow morning at 10:30 CDT they will be meeting with Dr. Wagner and they are hoping and praying that he will give them the go ahead to head home.
We know these last few weeks have been very anxious for them. They are SO ready to be home again. Please keep them in your prayers and tomorrow, say a little special prayer as they meet with the doctor.
And remember the boys and girls at the RMH and those still in the hospital. They are a very dear group of kids. So we ask for healing mercies for each and everyone.
Until tomorrow when Kevin and Barb can write (hopefully with VERY good news) may each one of you who reads this website have a very blessed night and tomorrow as well.
Grandma McKee for Kevin, Barb, Jess, Katie and Erin
Tuesday, August 23, 2005 7:51 PM CDT
Day 104
Happy Tuesday. Not much new to report from Minneapolis. We did venture out today for a little while. I needed to run to the grocery store, so Kevin and Erin accompanied me. They waited in the truck while I dashed in and picked up a few things. It was another beautiful day here. It feels just like autumn. The temperatures are not forecasted to get over 75 degrees this week. We've begun to notice lots of students returning for the start of school at the University of Minnesota. It's actually kind of an exciting time here!
We went on another nice walk tonight. After our walk last night, Erin ate better and slept better than she has in a while. So long as the temperatures stay cool and comfortable, I think we're going to try to take a walk each evening. It's a nice change of pace, and the fresh air is wonderful!
School starts tomorrow for Katie. She had to go and get a shot this afternoon before the start of the school year. I know she was glad to get that over with! I told her on the phone tonight to just RELAX now that the shot is out of the way. She won't have to get another one for at least two months when the flu vaccine comes out! (HA!) Bless her heart! The apple doesn't fall far from the tree. I'm not a big fan of shots either. This is the first time I've ever had to miss her first day of school. I can vividly recall the first day of school each year as I was growing up. It was such an exciting, frightening time! So many things to worry about -- will any of your friends be in your class? Will you be able get to your next class on time? What if you forget your locker combination? As an adult, I realize how silly some of these worries are, but as a 7th grader, they are very legitimate concerns! I just hate not being there for her. She has had to sacrifice a lot over the last couple of years, but she's always been very gracious about it. She understands why we are doing what we're doing, and she knows that if there was any way we could be with her tomorrow, we most definitely would. I am so proud of her! The way she has handled herself during this tough time has certainly revealed a lot about her character. She is growing up very fast. I miss her so much!
Tomorrow we pack! At first, I was reluctant to begin the packing process for fear it would jinx our visit on Thursday, but I've decided to move boldly forward and pack like crazy tomorrow. Whether it is this Thursday, or next Thursday, the packing needs to take place. It's amazing how much stuff you acquire after spending nearly 4 months away from home. We are so anxious we can hardly stand it! But, to be honest, I do feel a slight twinge of saddness at the thought of leaving this place. When I tell you that we have experienced every emotion you can imagine during our time here, I am not exaggerating. Fear, anxiety, tension, frustration, sadness, anger, impatience, contentment, peace, unbelievable joy and relief. We've been through it all! And few families in this day and age get the priviledge of spending the amount of time together that we have had this past summer. There were no friends on the telephone, no sporting events or practices we needed to rush off to, no hectic work schedules or home improvement projects that needed our attention. It was just us. There was lots of laughter, and many tears. Though we are weary, our faith has never been stronger. It was truly an amazing summer. Make no mistake -- next year, I want to go to the BEACH -- but this was a summer I will never forget!
Regarding our dear friends here -- we don't have much in the way of updates tonight. Terrell is still in the hospital. As Kevin mentioned last night, he went to the emergency room the night before last, and it appeared that he was going to be released today. However, he spiked a fever while he was in the hospital, which means he'll be in for another day or two so they can do blood cultures and make sure it's nothing serious. Jordan has been spending almost as much time here as he has at the hospital. I think that's a pretty good sign. There is some talk that they may need to remove his gall bladder. We are praying tonight that if they do decide to move forward with the surgery, it will take care of all of the problems he's been experiencing, and he will feel MUCH better VERY quickly. Brian continues to recover at an amazing pace. It is likely he will be released from the hospital this week. That is awesome news! We know Sidney had an appointment with Dr. MacMillian today. So far, I have not heard whether or not she was released to go home. I hope and pray that Sidney and her mom are already sitting in their living room tonight, packing Sidney's bookbag for school!
As always, your prayers are greatly appreciated! We thank you for sticking with us, day in and day out. It has been remarkable being able to share this journey with you! Your prayers have sustained us every step of the way. And I also thank you for the prayers your have offered on behalf of the other children we have come to know and care deeply about here. I think I speak for each family when I tell you that nothing is more appreciated! We are so blessed!
I suppose I have written enough for tonight! Hope all is well at home. We love you, and hope to see you VERY soon!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Monday, August 22, 2005 8:30 PM CDT
Day +103
Good evening and thanks for stopping by. Today was absolutely gorgeous!! The sky was blue, the sun was shining and it only got up in the low 70's! Couldn't ask for better.
Erin had an early clinic appointment this morning. It was nice for me because I like to get up and get going but Barb and Erin had a tough time of it. For the past 3 months, there has been few times when we really had to be anywhere early so the girls have gotten use to sleeping in a little (something that'll be a big change when we get back home). But we made it today just fine. Erin's stamina is improving as she walked both to and from the clinic this morning (about 7 or 8 blocks total). Her clinic visit went just fine as well. Nothing really different to report. Her WBC was relatively unchanged while both her Hgb and platelets were down a little from last week. Some of this may be attributed to her biopsy last week. Everything remains within the normal ranges. Since we're in the process of tapering her CSA (anti-rejection medication), she no longer needs to take her Amlodipine (a blood pressure medication that is usually required as a result of taking CSA) and her potassium supplement. That leaves her taking only a magnesium supplement, Voriconazole (V-fend) which is an antifungal, Bactrim (only two days a week) which is an antibacterial, and the CSA until she is completely tapered off the first of October. You can imagine she's pretty happy about the fewer pills! The rash that popped up last week is now completely gone but we're still applying the steroid cream once a day to safeguard against any recurrence. All in all, she's feeling great, getting exercise, and starting to eat better. We praise God everyday that she has a good attitude and is doing so well!
Then we broached the 'million-dollar-question' with Amy, "When do you think we'll be able to go home?" Amy, being the professional that she is, would not make any commitment or vocalize any opinion without Dr. Wagner's approval. We got the feeling that she understands our concerns and may even believe we should be able to leave but it's not prudent to her on-going employment to say anything without Dr. Wagner being present. As Barb mentioned in last night's update, Dr. Wagner was out of town last week and Amy sent him an e-mail regarding the potential of Erin being released. As of this morning, she had not received a response. She again commented that Dr. Wagner is one of the more conservative doctors when it comes to releasing patients. While I appreciate that he's not just sending us on our way just because the schedule says so and he wants to make sure everything is right but, come on, enough is enough - we want to go home! Barb and I have talked about this at length and IF there is a real reason that Erin is required to stay for additional observation key to her recovery, then of course we will stay. After all she's been through, we wouldn't do anything that would put her recovery at risk. IF he just wants her to stay for further observation "just because", then I think we're going to push the subject a little since we'll be coming back to another one of the world leaders in BMT technology in Cincinnati. We think that we'd be at much less risk than someone that doesn't have a Cincinnati Children's Hospital practically in their backyard. Not only that but we'll be scheduled to come back here in mid-November for Erin's 6-month checkup. So with all that said (glad I got that off my chest), we're scheduled to meet with Dr. Wagner on Thursday at 10:30am CDT (11:30am EDT). Please make it a point to say a special prayer on Thursday morning that all go well and, if it's the Lord's will, we'll be released to come home. Once again, we're putting the Lord in control knowing that His decision is always perfect.
Tonight as I close, please keep us in your prayers. That Erin will be surrounded by the Lord's protective arms. That she'll remain sickness free. We also ask that your remember Jess as she started classes at college today. I spoke with her this morning and so-far so-good. Also, Katie and the rest of the kids back home, will be starting a new school year on Wednesday. I pray that it'll be a fantastic year for Katie, as well as the others. Please continue to remember Terrell and his parents (Jan & Ken). He was out of the hospital then had to return on Sunday. I found out tonight that he spiked a fever while in the hospital and is still in. Jordan is making some good progress and hopes to get out very soon. Brian is making incredible progress and is well on the way to being released soon. Sidney, who was back for her 6-month checkup and had to stay a couple of weeks for more tests, had her final CT-scan today and will get the results tomorrow. We pray that all is well and she and her Mom, Becky, will be able to fly back to North Carolina as soon as possible. Please remember all the other families that are somewhere in this journey they called bone marrow transplantation. May they find the peace and hope that we have found through Jesus Christ.
Until tomorow. Our love to all....
-Kevin, Barb, Jess, Katie & Erin
Sunday, August 21, 2005 9:49 PM CDT
Day +102
Today was an absolutely gorgeous day here in Minneapolis. The temperature felt more like fall than summer. The sky was clear and blue, and it was just beautiful. Erin had another good day. We continue to spend most of our time in our room, but we did take a walk this evening to pick up something for dinner. I just felt like we couldn't let another beautiful day go by without getting out and enjoying it for a few minutes. It was nice.
Erin's appetite was better today. She's still not eating a lot, but she's trying. Her dinner consisted of almost half a cheeseburger, a couple of fries, two small glasses of milk and a bit of rocky road ice cream. I was quite happy with that. Tomorrow we have an appointment at the clinic with Amy. As I mentioned in my last journal update, I spoke to Amy on Friday, and she was going to e-mail Dr. Wagner regarding our possible release this week. Dr. Wagner has been out of town, so I don't know if Amy got any kind of response back. As you can imagine, we are looking forward to talking to her in the morning to see what the doctor's thoughts are. I think I might have opened a can of worms last week when I got on my "I'm ready to go home" soapbox. We spent a lot of time this past weekend talking about it. If Dr. Wagner puts the cabosh on it, we're all going to be very disappointed. Kevin and I have spent a lot of time thinking about what might cause our departure to be delayed further, and we really can't come up with anything so we feel pretty good. BUT, what we "feel" isn't going to matter much. It will all boil down to what Dr. Wagner says. As Kevin has said, it feels like we're just waiting around for another fever to hit. We expect to be fighting fevers for the next year or so until Erin's system is much stronger. If we hang around here long enough, we're bound to get another one!
Katie arrived safely back home yesterday morning. I miss her terribly. It's hard enough having Jessica so far away, but now we feel totally separated as a family yet again. I pray that our time here is short and that we can all be together again very soon. It's funny -- I always figured the really tough part of the transplant happened a couple of months ago. I'm beginning to realize that it's tough all the way through!
We got to celebrate another birthday here at the House today. (It's been a big week for birthday's here!) Sidney Williams turned 8 today, and we had a little party for her downstairs this afternoon. She was not planning or expecting to be here on her birthday. She returned to Minneapolis about two weeks ago for her six month check-up (her transplant was in February). Anyway, there were some additional tests the doctors wanted to run, so she's here for a couple more days. Tonight, I am praying earnestly that her test results will be perfect tomorrow and she will be cleared to head home on Tuesday afternoon. This is a big week for Sidney. She will be returning to school later this week after taking last year off. When you are 8 years old, the first day of school is a BIG deal and I am praying that Sidney will get to go home in time to catch the bus on her first day!
Brian continues to do extremely well. I wouldn't be surprised to see him released from the hospital sometime this coming week. Jordan had a procedure done late last week, and he was feeling much better. His passes from the hospital are getting longer and longer. At this point, I think they ought to let him leave the hospital and just come back for a couple of hours each day for meds! (What do you think about that Jordan?) I was discouraged to learn that Terrell had to go back to the hospital late last night, but was pleased to hear this morning that it appears to be only a minor setback and he should be released tomorrow at the latest (Praise God!). All in all, everyone is doing well here.
We are really praying for good news at our clinic visit tomorrow. We are hopeful that Erin's counts will remain strong, and that Dr. Wagner will agree with Dr. Barb that it's time for us to head home (HA!). You have no idea how much peace we get as a family from the knowledge that you are praying for us daily! When we have a need, we share it, and God takes it from there. It's been an amazing journey! It has also been a blessing to be able to share news regarding the other children here. We feel like their successes are our successes, and we are so thankful for their answered prayers. Thank you for all you have done for each of these children. They are all precious.
I think I will close here. We have an early clinic visit tomorrow. Until then, all our love.
- Barb, Kevin, Jess, Katie & Erin
Saturday, August 20, 2005 8:16 PM CDT
Day 101
Good evening and thanks for checking in. Today was an obsolutely beautiful day here in Minneapolis. Unfortunately, we didn't take advantage of it because, as we mentioned previously, we don't want to take ANY chances for Erin to catch another bug or run any fever that may extend our stay even more. For now, we are content to take our meals in our room and watch a few movies.
Our day started very early this morning (3:45am CDT) in order to get Katie to the airport for her flight. We decided last night that everyone would go to the airport to see Katie off. Barb and Erin just went to ticketing and then headed back out to the truck. I had a security pass and was allowed to escort Katie back to the gate and stay with her until she boarded. Grandma and Grandpa McKee met her at the gate in Cincinnati. Everything went very well and she arrived home safely. Just in time to start school on Wednesday. Because of the early morning the rest of the day was pretty lazy. So once again, we find our family separated. Hopefully it's not for long.
Erin had a good day today with no clinic visits scheduled until Monday morning. She continues to feel better and is making every effort to eat better. Barb kept telling her that every bite was one step closer to going home. I think this is giving her a little extra inspiration (she's on a cheeseburger kick now). Anything with calories is fine by me!
As Barb mentioned in last night's update, we plan to put on the "full-court-press" next week in an effort to be released to come home. We've met all the criteria thus far and Erin has been doing great since the EBV diagnosis several weeks ago. Unless there is something that they haven't told us, we're ready to get out of here. Since Erin's immune system will be compromised for AT LEAST the next year, we'll be living under the shadow of colds and fevers. There may be times that she'll get a fever and possibly have to be hospitalized for antibiotics. We know that. But the longer we stay here, Erin is exposed to many things that we have little or no control of. If she gets a fever now, they'll hospitalize her, run the antibiotics and then it'll be another two weeks of observation. It just seems to be a moving target right now. So we'll go in next week and see what happens. The Lord willing, by this time next week, we'll be sleeping in our own beds.
In closing tonight, I would like to leave you with a passage from my devotions a couple of days ago. It's amazing how some of these passages are put on your heart and days later will come back with a deeper understanding. It comes from Psalms 16:7-9 (NIV), "I will praise the Lord, who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because he is at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will rest secure," Verse 9 in the New King James Version (NKJV) is worded like this, "Therefore my heart is glad, and my glory rejoices; My flesh also will rest in HOPE." Hope is the one thing that we have had throughout our journey, true hope that only comes through Christ Jesus when we turn to Him in faith. The devotion author states, "When hope dies, despair will overwhelm us." How true that can be. Thus faith and hope, through Christ, go hand in hand. I don't know about you but that's a very comforting thought. I praise the Lord tonight for His faithfulness! My prayer tonight is that all those going through tough times find this same hope. It makes all the difference.
Until tomorrow, please keep Erin and all the other BMT families in your prayers. Our love to all....
-Kevin, Barb, Jess, Katie & Erin
.....A very special thank you goes out to Terrell (who is out of the hospital and just celebrated his 6th birthday) and family for Erin's "Day 100" gift. She loves it! I'll get a picture with her new hat and try to post it for tomorrow's update.
Friday, August 19, 2005 7:38 PM CDT
Day 100!!!
Well, we have finally arrived at the "Day 100" mark. To be honest, it wasn't much different than our "Day 98". I was expecting fireworks, balloons and confetti, and all I got was my usual bowl of cornflakes. Actually, it was another pretty good day for us. There really isn't much new to report. We removed the compression bandage from the area where they did the bone marrow biopsy yesterday, and that made Erin a lot more comfortable. She was restless last night (because of the bandage), but she took a good nap this afternoon and she seems to feel fine. She continues to be picky when it comes to eating, but she's trying and that's what's important.
This morning, we watched from our window as yet another bone marrow transplant family loaded up their car and headed for home. Something about seeing another family get the okay to head home made me want to cry. Although Erin was slow to engraft, her journey through the bone marrow transplant process has been pretty remarkable. Her counts are all well within the normal range, and have been for some time now. We have completed every test that is required of us and everything is looking good, yet none of our doctors have even broached the subject of when we might leave. I called the clinic this morning and talked to Amy (our favorite physician's assistant) and asked her if there was any reason why we couldn't plan on leaving for home after our visit with Dr. Wagner this Thursday. She said that it would not be unreasonable to expect to be released this week, but she also said that Dr. Wagner is one of the most conservative doctors in the transplant division and that he is never in a hurry to release his patients. So ... we are shooting for a week from today to head home. Of course, there are no guarantees, but that's what we're hoping for and that's what we're going to ask for when we meet with Dr. Wagner this week. Neither Kevin nor I want to rush things, and we would never do anything to put Erin's recovery in jeopardy, but we also know that there are many kids here at the Ronald McDonald house with a variety of different illnesses. We're not even sure what many of the children here are being treated for, or what risks these other illnesses might pose to Erin. It's kind of scary when you think about it! We are spending almost all of our time here, which means that Erin is continually being exposed to a variety of things every time we leave our room. At least at home we can control Erin's environment, and to some extent, what she's being exposed to on a daily basis. I think she would probably eat better for us at home, too. Stay tuned for our update next Thursday. It's either gonna be a GREAT update, or it's going to be ugly.
Katie will be flying home early tomorrow morning. I absolutely hate to see her go. Perhaps that's another reason why I'm so anxious about getting the go ahead to leave for home. I hate the fact that we will be separated again. Hopefully this time, it will only be for a couple of days. Please pray for Katie's safe travel home tomorrow. She's very anxious about flying alone!
Today is Terrell's 6th birthday. If you have followed our webpage, you know that Terrell is a little boy from Iowa who went through a bone marrow transplant to treat leukemia this past March. Though he has had a number of complications and setbacks, his spirit has never been broken and he is an amazing little boy. Tonight, I pray that the coming year will be an outstanding year for Terrell; that his health will continue to improve day after day, and that he will have the opportunity to do all the fun things that a 6 year old boy enjoys doing. Happy Birthday Terrell!
Also, please keep our friends, the William's family, in your prayers tonight. Their daughter, Sidney, went through a bone marrow transplant last February to treat her FA. They returned to Minneapolis recently for Sidney's 6 month check-up. They are awaiting some test results and hope to be able to head home next Tuesday so that Sidney can start school next week with the rest of her classmates (she was unable to attend school last year due to her illness, and the timing of her bone marrow transplant). Please pray for excellent test results and for safe travels home for Sidney and her mom, Becky.
That's it for tonight. As always, we greatly appreciate your prayers for Erin's recovery, and for all the children here at the Ronald McDonald House and at the hospital. We miss you, and can't wait to get home!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Thursday, August 18, 2005 8:11 PM CDT
Day +99
YES....We're back on-line!! It's amazing how we have become so dependant on the internet to feel connected to everyone back home. As we have said many times, your daily words of encouragement on the this website gives us the fuel we need to get through the day. On those rare occasions when we've lost access, we feel so alone. I'd like to thank Mom and Dad for filling in for us on those occasions. We didn't want anyone worrying.
Today's bone marrow biopsy went very well. Erin seemed to be less stressed about the procedure than on previous procedures. After the biopsy, we returned to the RMH (at about 11:30) and Erin "thought" she wanted to nap. In reality, she layed down for a moment and then decided she was more hungry than sleepy. This wasn't a complete surprize since she hadn't eaten anything since last night. Have we mentioned her appetite is returning? The past couple of days she has eaten very well and today was no different. Afterwards a little snack, we spent the afternoon just relaxing and watching some movies. The site of the biopsy is a little tender and makes it a little difficult to find a comfortable position. This is due, in part, to the "wad" of gauze and compression tape they put on to keep pressure on the site and safeguard against later bleeding. After 24 hours, we can remove the bandage and, if history holds true, it usually feels much better. We probably won't have any results from the biopsy for several days.
The rash that Barb mentioned a few nights ago is much improved and no further signs of fever. Praise the Lord! The prescription of steriod cream seems to be getting things under control and many of the areas are drying up. They still feel it's not GVHD (graft-vs-host disease) of the skin. We find ourselves wanting to return home so badly that everything that happens at this late stage of the protocol, that may ultimately extend our stay, seems to be a drain on our very souls. But then God reminds us that He is in control and our prayer remains to be for Erin to be cured. Erin has done so remarkable during this entire process. Time and time again, the medical staff is amazed by her progress. Just another example of the awesome God we serve. We look around us and so many families here are battling hurdles and diseases that we can not even imagine. And God is there too, bringing them comfort and encouragement. So whatever that takes, we will continue to follow His leading.
Our next appointment at the clinic is scheduled for Monday morning. This will be for the routine set of labs. All her counts are currently in the normal range and the EBV count continues to be "0"!! We don't have an appointment set with Dr. Wagner yet but, we're hoping to see him next week and then......who knows, maybe he'll kick us out. We'll have to wait and see.
It's difficult to think that we're on the brink of 100 days since Erin's transplant. In many ways it seems like only yesterday that Pastor Paul and Stacy were here giving a blessing on the day of Erin's transplant. A blessing in which we asked God to be in control of EVERY aspect of her recovery. A blessing for that unknown couple that donated the umbilical cord of their newborn child that has ultimately given our child a new chance at life. A blessing on the medical staff that would be monitoring Erin's progress. And a blessing on our family to have the strength to endure whatever this journey held in store. Barb and I are here to tell you that the Lord has blessed and, is continuing to bless, us beyond our wildest imagination! He has been so real to us. During all of this, Erin has made a decision for Christ because she has experienced first hand what life is like when you put Him in control. We praise the Lord everyday for our experience.
In closing, we would ask that you continue to lift Erin in prayer. That our days remaining here will be few and that Erin's progress will continue to amaze the "experts". Please remember Katie on Saturday as she will be flying home. We have it set up with the airlines that I'll be able to walk her to the gate and Mom/Dad will be able to meet her at the gate in Cincinnati. Please keep Jessica in your prayers as she'll soon be starting classes at college and is already moved in to her dorm. Also remember the other families here; Jordan continues to make improvements (I saw him this evening at the RMH on a pass from the hospital), Terrell is making great progress and I understand is out of the hospital (his 6th birthday is tomorrow. HAPPY BIRTHDAY TERRELL!); Sidney came for her 6 month check-up and is still having some tests regarding her lungs, Brian continues to make steady progress since his transplant, Tom who is still getting over some bumps but is scheduled to leave for home tomorrow (Way to go Tom!), Whitney who continues to have a time of it as they just diagnosed her with chicken pox (which can be very serious post transplant) and all the others that we have come to know since we've been here.
Until tomorrow. Our love to all. We miss you....
-Kevin, Barb, Jess, Katie & Erin
Wednesday, August 17, 2005 9:18 PM CDT
Day +98
Sorry to report that the RMH server is down again so Kevin and Barb will be unable to do their Journal Update. They will be back on-line tomorrow, hopefully. They have asked me to again thank you for checking in. I will report to you the basic information I know.
HAPPY to report her temperature is back to normal and the rash seems to be getting better. The steroid cream must be helping. And it appears her appetite has returned because she has eaten great today! Praise God, she seems to have turned the corner yet again.
Tomorrow they will do another bone marrow aspiration. It is scheduled for 9:00. We appreciate your keeping her in prayer at that time.
Remember too the other children at both the RMH and in the hospital. From what Kevin and Barb reports they are a great bunch of kids. And don't forget those Moms and Dads of those kids. They need our prayers too. Until tomorrow, thanks again for checking in.
Grandma McKee for Kevin, Barb, Jess, Katie and Erin.
Tuesday, August 16, 2005 8:56 PM CDT
Day +97
It was another beautiful day in Minneapolis, though we didn't get to see too much of it. Kevin got up early and took a long walk before the rest of us got up. We've been sleeping in a little bit lately, mostly because there just isn't much else to do! Boy, are we anxious to head home!
Erin ate a little better for us today. I've come to the conclusion that it's not so much she won't eat for us -- but more that she is just not a snacker, and she typically does not prefer fattening foods. (Imagine that! Hard to believe she's my daughter!) She's the type of kid who will choose fruit over sweets every time. We've been trying to entice her with something from Dairy Queen (it's within walking distance of the Ronald McDonald House), but she only requests a slush -- nothing with much fat in it.
The rash I mentioned in my update last night persisted into today. We took her to the clinic this afternoon to have them take a look at it, and they prescribed a steroid cream. So far, they really can't tell what's causing the rash. A rash is a fairly common side affect (GVHD) to transplant. There are several families here who have experienced the rash, and if caught early, it typically goes away fairly quickly. In addition to the rash, Kevin just came down to the computer room to tell me that Erin is running a low-grade fever tonight. As you can imagine, this is not something we want to see. Please keep Erin in your prayers tonight. It could be that this temperature will go away quickly and turn out to be nothing -- but we will be watching it closely.
I think I'll run upstairs and check things out. Kevin and I are becoming weary of the setbacks. We are thankful beyond measure for our progress to date, but this process is unbelievably tough, and we are so looking forward to wrapping up our time here.
Thank you for checking on us, and thanks, as always, for your faithful prayers.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Monday, August 15, 2005 7:25 PM CDT
Day +96
We are finally back on-line here at the Ronald McDonald House! We really missed being able to update the webpage over the weekend and correspond with family and friends. It was also tough not being able to check the other webpages to see how our friends are doing. I don't think we fully realized until this weekend how much we have come to depend on the internet!
There isn't much to report regarding the weekend. Other than a quick trip to the airport to secure a ticket for Katie's return flight next weekend, we pretty much stayed in our room.
Erin had a fantastic visit to the clinic this morning. All of her counts have rebounded from her recent stay in the hospital. Her platelet count was almost 235,000 today. That number just thrilled us! But, the most exciting bit of news we got from our clinic visit today was that Erin's EBV count from her last set of labs was ZERO. ZERO! When she was diagnosed, Amy said her EBV cell count was nearly 200,000. Today, it's zero. Amy said she was absolutely astounded that Erin did not require a second dose of Rituxin. Neither Kevin nor I were astounded. We just smiled. We were relieved, as you can imagine -- but not really surprised. We have come to expect GREAT things when it comes to Erin's recovery. With so many people praying for her, nothing surprises us! Thank you for your faithful prayers on Erin's behalf. They absolutely make all the difference!!
I guess our biggest concern tonight is her appetite. In spite of our very best efforts, she's getting bored with the whole eating thing, and she's consuming very little overall each day. Her weight was up slightly (emphasis on SLIGHTly) today, but you'd never know it by what she's eaten over the last several days. She takes a couple of bites at each meal, and that's about it. It's becoming a battle of wills, and Kevin and I don't feel like we're winning this one. She can be incredibly stubborn when she wants to be. We've discovered that no amount of bargaining, begging or demanding is having much impact. It's incredibly frustrating! We feel like we're right on the verge of coming home again -- and her weight could put it in jeopardy. Clothes that fit her perfectly when we arrived in Minneapolis hang on her today. She is the one in the family that can least afford to lose weight. It's kind of scary.
She also has begun to develop a skin rash on her body. It only really appeared today, so we've given her some Benedryl in the hopes that it is something that will go away quickly. Since we've begun to taper her CSA (her anti-rejection medication), we are a little bit concerned that it might be the beginnings of GVHD of the skin -- but the rash is not red or itchy at this point, so we're keeping a close eye on it.
Jessica got moved into her college dorm on Saturday, and it sounds like she's getting settled in. Her only complaint at this point is that her room is hot and she can't have an air conditioner. Thankfully, it won't be hot for much longer. The fall will be here before we know it. We are really looking forward to the day when we can visit her and check out her new place.
That's the latest from Minneapolis. These are tough days for us. We feel like we're so close to coming home, but anything can result in a delay at this point. We would GREATLY appreciate your prayers tonight. We are praying that Erin develops a hearty appetite in the days to come, and that whatever is causing the skin irritation will be minor, and easily treated. As always, we would also appreciate your continued prayers for the other children here. We've got it easy compared to many of them, and we thank God for how well Erin is doing tonight. I am humbled by how brave all of these children are.
Thanks, again, for checking on us tonight. Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Saturday, August 13, 2005 1:52 PM CDT
Thank you for checking in today. Kevin called and asked us to post this message on their website. The internet access is down at the RMH and they knew people would be worried/calling about Erin. Understand the website will be down until Monday. Erin had her CT-scan on Friday and everything went fine. Results won't be known for several days. She is feeling fine, eating well and is very much like her old self.
They always sign off by thanking everyone for their continued prayers for Erin and all the other children. We pray the same.
Until Monday,
Gil & Joyce McKee for Kevin, Barb, Jess, Katie and Erin
Thursday, August 11, 2005 6:56 PM CDT
Day +92
Good evening and thanks for checking in on Erin's progress.
We started the day with another visit to the clinic and Dr. Wagner. The visit went quite well with all her counts coming back well within the "normal" range. The real highlight of her counts was her platelets which were 183,000 today! That's more than eight times higher than when we arrived in Minneapolis!
As you probably guessed, the majority of our visit with Dr. Wagner was centered around the EBV treatment and potential concerns as a result. Dr. Wagner commented that this was the first case he has seen of EBV with a FA BMT patient. Not to say that it can't happen, just the first one he's seen (leave it to us to be the first). He further noted that it would have been the last thing he would have thought in Erin since earlier tests had shown that she had one of the most advanced post-transplant immune systems he had seen. At this point, he feels that the virus reactivation was caught very early. The course of treatment that was chosen was a combination of a drug called Rituxan and a tapering of her Cyclosporin (CSA), an anti-rejection medication that Erin takes twice a day. He said more than likely, Erin's immune system could have controlled the virus on it's own but to take her completely off her CSA all at once could have put her at a higher risk of GVHD (graft-vs-host disease). The tapering of the CSA is about three months ahead of the normal protocol. So for now, we wait and monitor the EBV levels on a weekly basis. The objective is to get the virus back to a "dormant" stage. His best estimation at this point is another 2-3 weeks to insure the EBV levels are moving in the right direction and her own immune system truly has it under control with no signs of GVHD. Our only outward indicator will be her lymph glands, which are considerably smaller and no pain since Sunday. As a precaution, we will be having a CT-scan tomorrow morning to insure no other lymph glands show signs of concern.
Outside of the visit, Erin's been eating very well and appetite continues to increase, even though her weight slipped a little this week. Her energy level is improving as we've been taking longer walks to increase her stamina but she still tends to tire quickly.
As noted previously, since it appears that we'll be here for a few more weeks, we're looking to fly Katie home in time for the start of school, probably sometime next weekend. Barb and I are a little nervous about her flying by herself but we know that we can set it up with the airlines to get an escort to her gate and to meet her in Cincinnati. Barb and Katie are planning a little "back to school" shopping excursion tomorrow to pick up a few things to get her started. It'll be nice for the two of them to just get out for a little while. Erin and I are planning a day of DVD movies and popcorn after her CT-scan.
Again, thanks to all for your continued prayers. We have received so many cards and letters of encouragement. We couldn't have made it if it hadn't been for the hundreds of prayers that have been lifted on Erin's behalf. We're getting closer to our departure from Minneapolis but will be starting a whole new chapter of the journey being at home. We ask for continued prayers for all of our BMT friends; Jordan, Brian, Terrell, Devin, Sidney, Nate and especially little Jared as he gets to head for home tomorrow. We pray for traveling mercies for he and his family. Way to go Jared!! May God's grace touch and keep each and everyone of them.
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Wednesday, August 10, 2005 6:46 PM CDT
Day +91
Thanks for checking in on us tonight. We had another good day. Erin is chipper and feisty, and that makes us feel really good. She has been taking a mid-day nap without much fuss, so I know she's still working on getting her energy level back up. She's eating like a little trooper though (her grandparents would be proud of her!). All in all, we're doing great. We will be meeting with Dr. Wagner tomorrow, and we're hoping to get a more definitive time-frame for treating the EBV. Amy (Erin's PA) was able to give us a general timeframe, but Dr. Wagner is the one who is calling the shots so we should have a better idea of where we are after our visit tomorrow.
Over the last couple of months, Erin has been asking (consistently and repeatedly) to be baptized on her birthday this year. The first time she asked, I thought it was sweet but I wasn't sure she was really serious about it. But over the last several weeks, it has become apparent to us that this is something she is VERY serious about and very determined to do. As I think about it, I cannot imagine a better way to celebrate her life than to plan her baptism for when we get home. Over the last three months, Erin has come to depend on God in a way that few 8 year olds can imagine. She has seen His work and felt His touch personally. Perhaps this is her way of saying thank you to God for never leaving her side through all of the tough times she has experienced. She loves Him and she trusts Him completely. Her faith is inspiring! As emotional as the last couple of months have been for us, I cannot imagine anything more emotional than watching her be baptized. I get a lump in my throat just thinking about it. I'm determined to work on this and see if I can arrange it for a Sunday near her birthday. One thing is for sure -- on that day, whenever it is, there will be rejoicing in heaven and in Bethel! I can't wait!
An update on our friends here at the RMH: Devin had to have his central line replaced and a feeding tube put in. He's a little down in the dumps today. Jared is still on track to leave Minneapolis for home on Friday. We wish he and his family the very best, and a safe trip home. Sidney, who left Minneapolis shortly after we arrived here for Erin's tranplant, is back for her 6-month check-up. She developed a low-grade fever today and was admitted to the hospital so they could check it out. Our prayer is that her hospital visit will be VERY brief, and that this fever will go away quickly and completely. Our little buddy Nate from Kansas was readmitted to the hospital near his home with a fever. We are praying that it has already resolved itself, and he's back home tonight. We got to see Terrell this evening. He was on a pass from the hospital and his mom brought him to the RMH to help prepare for a birthday party they will be having for his little brother this coming weekend. It was so nice to see Terrell, and we are so anxious for him to be released from the hospital! There are still a few issues they are trying to work out, but he is a tough little guy and he's working hard to get better. Jordan was also out of the hospital this afternoon on a pass, and he spent a good deal of time with his mom at the RMH. His bilirubin count is up again, and the doctors are trying to figure out why that is. I know all of these families would greatly appreciate your prayers this evening.
As always, your prayers for Erin are greatly appreciated. I've said it time and time again -- but it is so true -- you have no idea what a difference they have made in this journey we are on, and in Erin's recovery. We could not get through this without you! Thank you!
And, before I sign off tonight, I want to send a special message to my dear friend Maria! You have been on my mind all day today, and I'm praying that I will be hearing good news very soon. I am so exicited for you, Chad and Michael. Hope everything went smoothly, and that you and the baby are doing well tonight. You are in my prayers.
It's looking a bit stormy outside, so I'd best sign off here. We love you and we miss you guys! We can't wait to see everybody again.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, August 9, 2005 8:24 PM CDT
Day +90
Good evening and thanks for checking in. Today was pretty gloomy here in the Twin Cities. It was overcast and humid much of the day and then poured rain this afternoon.
Erin continues to eat well and has had much more energy. We had our clinic visit this morning and Erin walked to and from the clinic (about 7-8 blocks round trip). Everything went very well. Erin's counts seem to be rebounding nicely from our stint in the hospital. Her WBC was 7.8 (up from 6.1 on Sunday); her Hgb was 11.7 (up from 10.5 on Sunday); and her platelets were 143,000 (up from 109,000 on Sunday). We met with Amy, our favorite nurse practitioner, and she said while they don't see EBV post transplant a lot, they do see it from time to time and have treated it very successfully in the past. As she recalled, their last patient that had EBV only required the single treatment. We pray that this is the case for Erin. As we said in a previous update, they're also reducing her CSA (anti-rejection medication) to enable her own immune system to fight off the virus. Amy gave us a schedule which has her completely off this drug by October 1, about three months ahead of the orginal schedule. This, of course, has us a little concerned for the increased risk of GVHD (graft-vs-host disease). According to Amy, we're probably looking at 2-3 more weeks in Minneapolis as a result of this virus. They want to be asolutely sure that the single treatment is doing the job and that they're not seeing any complications as a result of the decrease in her CSA medication. Outside of the virus, Amy said Erin looked great! We're scheduled to meet with Dr. Wagner on Thursday. Boy do we have a list of questions for him.
As Barb said in last night's update, outside of visits to the clinic, we're sticking close to our room at the RMH. The girls have been playing dolls, watching movies, coloring and playing UNO. They keep themselves occupied but it'll probably get boring before we get to head home. With the 2-3 additional weeks Amy is projecting that we'll be here, we're going to look at flying Katie home in time to start school on August 24. She's getting anxious for school to start but at the same time doesn't want to leave without us. We've weighed all the options and feel it's in her best interest that she get back to a normal routine, start school her classmates and then we'll hopefully be home soon there after. If it were going to be months longer, we might have decided differently. Even though she'll be staying with Grandma and Grandpa McKee, please keep Katie in your prayers as she'll have to fly by herself for the first time and be separated from us again for a short time. It just not the same when we don't have the whole family together. Speaking of the whole family, I want to thank everyone for the continued prayers for Jessica. She's started physical therapy for her back and says she believes it's helping as the pain has eased somewhat. She's still on limited activity but feeling better. I would greatly appreciate additional prayers for Jess this week as she leaves for Wilmington College on Saturday. I had wished that we could have been there to help her move in. This is the next big chapter in her life and we couldn't be more proud of the confident young woman she has become. My prayer for her, and all my girls, is to first be a Godly woman, to be a postive example to those around you, to be full of joy that can only come for knowing Jesus Christ, and to be happy with who you are. I love you Jess, I'll see you when we get home! Go Quakers!!
In closing, please keep Erin and our family in your prayers for continued strength for the coming days and for complete healing from this single treatment. We also ask you to continue praying for Jordan, Terrell, Brian, Jared, Nate (who had to enter the hopital back home due to a fever), Whitney, Titus and Roman (two little brothers who both went through BMT), Devin, and Sidney (who we saw at clinic back for her 6-month check-up---Way to go Sidney!!) and all their families. Our love to all...can't wait to get home.
-Kevin, Barb, Jess, Katie & Erin
Monday, August 8, 2005 8:20 PM CDT
Day +89
Wow! 89 days post-transplant. It's hard to believe. Our "old" life is getting harder and harder to remember. I can't decide if that's a good thing, or a bad thing! I can say this much -- we are SO ready to get the "all's clear" sign and head home. This has been a journey we will never forget, but we're ready to leave!
Erin had an excellent day. We are now operating under the "extra super extremely cautious" mind-set. We are taking all of our meals in our room. No more trips to the park, or lunch out somewhere as a "treat" for a good clinic visit. We've gotten back to the basics, and we're planning on remaining there. Even though Erin probably had the EBV cells in her body prior to transplant, the thought that we might have picked it up somewhere along the way post-transplant makes me absolutely sick. We have a clinic visit tomorrow to see our very favorite PA (Physician's Assistant) Amy. She's absolutely the BEST at soothing frazzled nerves and reassuring anxious parents. Hopefully, she'll be able to give us an idea of how the next couple of weeks will go. We have no idea what to expect at this point. Erin could continue to be observed and/or treated for weeks, or they could conclude after a few lab visits that the Rituxin did the trick, and we are cleared to head home. We will be meeting with Dr. Wagner on Thursday. Hopefully, we'll have a good idea what the plan is by the end of this week. Just seeing the glow in Erin's eye's again, and hearing her laugh is good enough for us. She is clearly feeling better, and we are rejoicing! We'll hang out here as long as necessary to make sure that she's is in good condition to head home and complete her recovery.
Today was uneventful. Uneventful is good. Tomorrow we have a clinic visit, but that adds a little structure to our day, and that's actually a good thing. It's great being back at the Ronald McDonald House. There is something so comforting about having the family together, under one roof, at bedtime. We are just so thankful that Erin has recovered from her fever. She is back to her old, feisty self once again.
Tonight, as always, we thank you so much for your prayers on Erin's behalf. She has improved dramatically, and appears to have suffered no ill-affects from the trauma of last week. Please continue to lift up our other friends - Jordan, who is improving daily, but whose father had to head back home yesterday. His mom is handling everything by herself right now, and I can't even imagine how difficult that is. Terrell, who continues to work harder to get better than any 5-year old I've ever seen. His attitude and determination are absolutely astonishing. He's going to do great things when he grows up, I just know it! Brian is Day +10, and he's doing a remarkable job. I have no doubt that Brian's recovery will be amazing because he's doing everything right and his attitude is absolutely fantastic. Devin is back in the hospital with an infection. His family has been through so much lately that I just pray this infection will be easily cured and he'll be out in a day or so. And finally, Jared, who is heading home on Friday. We will miss you're whole family, Jared, and we wish you a long, healthy life! Be safe as you travel.
And with that, I'll close for tonight. Thanks for checking on us, and thank you for your prayers. They truly do make all the difference.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Sunday, August 7, 2005 8:24 PM CDT
Day +88
Good evening and thanks for checking in on Erin. Tonight we just want to praise the Lord for answered prayer because Erin was able to be released from the hospital late this afternoon and we're back together at the RMH.
Before bed last night, Erin and I went for a few laps around the unit and she did very well for someone that had been in bed for a week. Erin slept very well all night, only getting up once to use the restroom. This morning, she woke with lots of energy and ready for breakfast, which she ate pretty well. As for being released, the deal was that she had to remain fever-free for 24 hours after being taken off the IV antibiotics. Since she hasn't had a fever for a couple of days now, except for the spike we saw during the infusion of the Rituxan, we should have been released much earlier. But the resident doctor thought it would be a good idea to make it 24 hours from the time she spiked (even though we knew that fever was going to be a side affect of the treatment and had gone back to normal prior to finishing the infusion). We later found out that the additional medication they gave her when she had the reaction at the beginning of treatment (chills, fever, shortness of breath, etc.) was normally a pre-medication that is given but the resident doctor wanted to hold it and not "over medicate" her. Our nurse had a lot of experience with this treatment and knew what to expect. When Erin had the reaction, she not only instructed that the additional medication was required, but instructed the resident to order up the next medication that is used IF the reaction continued as the infusion rate was increased. You could just tell that she was very frustrated. By the grace of God, the reaction did not continue and the additional med was not required.
As Barb noted, this was by far the most stressful thing that we have been through since being here. I believe some of Erin's anxiety came when the treatment came in a bag labeled "Chemo". Between seeing that and one of the nurses commenting on the chemo protocol, she freaked out. Can't say that I blame her. Barb mentioned that I was a "rock" when in reality I was concerned too. But I had prayed that the Lord be in control and He was. He needed me to be there for Erin to calm her and encourage her. I could see the monitors so I knew that her blood pressure was fine, her oxygen level was fine, her pulse rate was fine, her fever was going up, but they told us to expect that. I could look in her eyes and knew she was scared but reassured her that she was very brave and just needed to relax. Eventually she did. As I later reflected on what had happened, I was reminded of a song that says, "sometimes He calms the storm and sometimes He calms His child." How very true that was on Saturday. In the midst of the storm that was raging in that hospital room, He gave me peace and kept me focused on what I needed to do. We serve an awesome God!
The comment of the day came from one of the BMT doctors who said we were "LUCKY" that we found the EBV early before the start of any further complications. There was nothing LUCKY about it, it was God looking out for us and making a way to get it taken care of. Luck...it's a funny word. At one time or another, we've all said we needed a little luck. Luck on a big test at school, luck on the job, luck with your kids or your marriage. But it's not a matter of "Luck". Remember my favorite verse from Jeremiah 29:11? God already has a plan for each of us. A perfect plan to give us hope and a future. We just need to seek Him first and He'll make it happen. But God is a "pro-choice" God. You're allowed to choose His plan or try one of your own. Which one to do you think will be successful? "As for me and my house, we will choose the Lord."
What happens from here? Tomorrow, we need to call the clinic and schedule an appointment with Dr. Wagner to discuss what we can expect from here. As we understand it, the Rituxan is already attacking and dissolving the B-cells. Erin's lymph nodes in her neck and chin were swollen and very sensitive prior to treatment but tonight have reduced some in size and much less painful, proving that the medication is working. In addition, we've reduced her CSA medication (anit-rejection drugs) to allow her own T-cells fight off any remaining infected B-cell not wiped-out by the Rituxan. In the coming weeks, they will be monitoring B-cell, T-cell and EBV counts. Our prayer is that a second treatment will not be required and the virus is completely contained and eliminated. We also pray that the reduction in her CSA will not bring on any GVHD (graft-vs-host disease). We'll hopefully know more once we meet with Dr. Wagner.
Until tomorrow. Please keep Erin in your prayers and Barb and I to give us strength for the coming weeks. We also praise the Lord tonight for the progress that Jordan is making. Please pray for continued strength for his parents (Darlene & Jeff) as Jeff had to return home today. (Darlene...let us know if you need anything at all) Also remember Terrell as he makes slow progress. He will be celebrating his fifth birthday on August 19th. Though it appears that he will not be home for his birthday, we pray that he has a very HAPPY BIRTHDAY wherever he is and many, many, many more to come. We also praise the Lord that Jared will be going home on Friday! Thank you so much for your continued prayers and support. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Sunday, August 7, 2005 6:41 AM CDT
Day 87 (Update for Saturday, August 6)
Thank you for checking on Erin today, and sorry for not posting an update last night! Yesterday, in my opinion, was one of the most difficult days we've had since arriving in Minneapolis. As Kevin mentioned yesterday, the doctors told us us that Erin tested positive for the Epstein Barr Virus (EBV). This is a fairly serious complication that, left untreated for a length of time, can potentially turn into a form of cancer of the lymph nodes. The fact that they detected it in Erin at all is miraculous. We figured out that the EBV was probably not responsible for any of the symptoms that landed Erin in the hospital. We were praying for a quick break to Erin's fever, but if her fever had broken quickly, the doctors would not have bothered testing her for EBV, and we might have returned home without ever knowing she had this virus that needed to be treated ASAP. Yet another sign that God truly is watching over Erin, providing for needs that we don't even know we have!
The day started nicely for Erin. She remained fever-free throughout the night, and she was in a great mood yesterday morning. She had pizza and chocolate milk for breakfast, and she really enjoyed it. (New hospital menu for the kids. Go figure!) They finally got the medicine started to treat the EBV at about 11:30 am, and Erin had a reaction to it almost immediately. She complained of extreme nausea and shortness of breath. They stopped administering the medicine briefly, and decided to treat the symptoms she was having, but to let the medicine continue. It was frightening to see! At one point, I felt like we were fighting a losing battle. Within a 30-minute timeframe, her temperature went from about 97.5 to nearly 103 degrees. It seemed like everything was falling apart, and I was getting frantic. She started chilling so badly that her bed was "trembling." We had the resident doctor and two nurses in our room watching Erin's every move in case they needed to make a split-second decision regarding her care. Kevin, through it all, was a rock. He managed to stay remarkably calm as the storm raged around us. No wonder Erin prefers him when the chips are down! I am so thankful he was there!! I was on the verge of a breakdown. To see you child go from happy, bubbly and vibrant to so terribly sick and miserable within a couple of minutes is a nightmare!
Anyway, to make a very long story short, the nurse that was overseeing Erin's care yesterday insisted that they give Erin another medicine that they contemplated using as a pre-med to help with any reactions (but decided not to give her in advance of the infusion). Once she received this medicine, things turned around and within an hour or so, her temperature was back down to normal and things moved pretty smoothly from there. But, make no mistake, I was shaken to the core! It was a traumatic day. Because they had to administer the medicine a bit more slowly at first, the infusion took about six hours to complete.
So, that was our day yesterday. Started on a "high" note and ended on a "high" note, but it was a tough afternoon. I am anxious to get back over to the hospital this morning to see how her night went, so I'll sign off here. We may be released from the hospital today, if Erin remained fever-free during the night. That is my prayer this morning.
Hope you are all doing well on this holy day! We miss you, and simply cannot wait to return home. We should be able to update the website tonight, so check back later and we'll let you know if we're all together here at the RMH!
We love you guys, and appreciate your faithful prayers more than we can say!
Until tonight...
- Barb, Kevin, Jess, Katie and Erin
Friday, August 5, 2005 9:33 PM CDT
Day 86
Good evening and thanks for checking in on Erin.
Sorry for the late posting but it has been a very long day. We're happy to report answer to prayer since it seems that we finally have a handle on Erin's fever. It has been normal all day and she has eaten very well today. Her counts came back pretty good with her white count dropping slightly (due to the fighting whatever has been causing the fever) and received a very nice bump in her red count from yesterday's transfusion. Her platelet count was up slightly. In talking to the resident doctor this morning, it appeared that we may have turned the corner and could expect things to start improving. That was this morning.
This afternoon we spoke to one of the BMT doctors. We had been expecting the final results from all the tests and cultures that have been performed over the course of the week. All the cultures came back negative, showing no bacterial infection was found. The test for the cytomegolovirus (CMV) came back negative. CMV is a virus that most everyone, at one time or another, is exposed to and experience flu-like symptoms. The problem is that this virus can then lay dormant in your body until something activates it. Erin tested negative for the virus prior to transplant and since she had cord blood, her donor cells were of course virus-free. Without an immune system, it's impossible for a BMT patient to fight-off this virus by themselves and usually takes several weeks of treatment to correct. The final test was for the Epstein-Barr Virus (EBV) which is also the virus that causes mononucleosis. Unfortunately this test came back positive. This is another virus that most everyone is exposed to and the virus can lay dormant in your body. When activated, this virus produces antibodies in the body's B-cells. These antibodies, if left unchecked, can kill off good blood cells. In a healthy person, their immune system would kick in and destroy these antibodies. Since Erin's immune system is being suppressed by anti-rejection drugs for her transplant, her system is not strong enough to destroy the antibodies by itself. If they were to take her off the immune-suppression drugs too quickly, it could result in Graft-vs-Host disease (GVHD).
As result, the doctors will start treatment tomorrow with a drug called Rituxan. Rituxan is often used in cancer treatment to reduce B-cells. Since Erin doesn't have a large quantity of B-cells, the thought is that they would give her one treatment of the Rituxan in hopes of destroying most of the EBV-infected B-cells. At the same time, they're going to slowly reduce her CSA (anti-rejection drug) and allow her own immune system to hopefully take care of the remaining EBV infection. If left completely unchecked, the virus could cause tumors throughout her body. When we asked the doctor on a scale of 1-to-10 for seriousness (1 being not too bad and 10 very bad) he said it would rate a solid 4. Since we have been cruising along so smoothly, you can imagine how this initially took the wind out of our sails. Erin cried, not because she would have to go through this treatment, but because she just wants to go home. Being away for so long has us all looking forward to getting home.
A week ago when Erin first stared her fever, Katie made an interesting comment to Barb. She said that maybe Erin has a fever because God does not want us to leave yet. Who knew that a week later, she would be so correct. The doctor said that normally, EBV would not produce the fevers we've seen with Erin. He said she obviously had another "bug" along with the EBV that was contributing to the fevers. Remember that we went into the hospital last week with a 101 fever, it came down and Erin was released, only to be readmitted the next day with 102 fever. It later went to 103, which forced the doctors to start doing other tests. Coincidence???? I don't think so!! I know that it was the hand of God that knew something still needed some attention. Katie was right, we weren't suppose to leave yet, God wouldn't let us. If it wasn't for the persistent fever, they wouldn't have run the tests, we would not have known about the EBV antibodies, and it may have resulted in further complications or even tumors if we would have come home without treatment. Praise God for His blanket of protection over us and His intervention to correct the problem! Remember my favorite verse from Jeremiah 29:11, "For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." It's still true today.
Not sure what tomorrow will bring or if the treatment will work first time or if it will take multiple treatments. We know it WIll be treated and it WILL be fixed. We know that we'll be together to go through this, although we'll probably have to put Katie on a plane in order to be back for the start of school. One thing is for sure, God is STILL in control tonight! We're told that this treatment will probably keep us here at least another 2-3 weeks. We know tonight that we'll be here until God decides it's time to come home.
Please keep us in your prayers as well as all the BMT patients and their families.
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Thursday, August 4, 2005 2:39 PM CDT
Day 85
Good afternoon and thanks for checking in on us. It's a beautiful day here in Minneaplois, we had some rain last night so it is much cooler today. Unfortunately, Erin is still in the hospital and can only enjoy it from her window.
Things are looking much better today. Erin slept well and had a slight fever at 4:00 this morning. They gave her a dose of Tylenol, which brought it down. Since then, her temperature has been in the normal range all day! Praise the Lord for answered prayers! Her counts slipped a little today, WBC 7.2; Hgb 7.4; and PLTS 99,000. The doctors said some of this can be expected with the fevers she has experienced. They still think she has a virus that will run it's course and go away. The one area that they have been a little concerned, and have been monitoring VERY closely, is her hemoglobin (Hgb). They don't like seeing the BMT patients getting below 8.0, as a result, Erin is receiving a transfusion as I write this update. If you've been following Erin's progress, you'll recall she hasn't required a red cell transfusion since she was released from the hospital 7 weeks ago. Because she has been transfusion independent for that length of time, the doctors are wondering, why the sudden drop now? (So are we!!)
We just finished speaking with one of the BMT doctors and all the tests they have put her through have come back negative for bacterial infections and her CT-scan (sinus/abdomen/pelvis) was completely clear. (Still thinking virus) It appears though that Erin's body has built up a red cell antibody. This antibody has fragmented some of her red cells. He met with one of the Hematolgy Specialists and they feel that since there is only one antibody, this is something that could have been in her system for a while and not something new (that's a good thing) and shouldn't cause a problem. So for now, Erin will receive the transfusion, and then they'll monitor it to see what happens. They continue to speculate that the drop in her counts is more a result of the virus she has rather than this antibody. IF it IS causing the drop and destroying the red cells, they can treat it. For now though, they're thinking they'll want to keep Erin a few more days to monitor everything. Currently she's getting three different IV antibiotics and they want to also make sure that the fever doesn't come back as they take her off these drugs. So for now...we wait. Something that we have had to get better at.
My devotional today couldn't have been a better reminder of this. It comes from James 1:3 which reads, "The testing of your faith produces patience." Billy Graham writes;
"Patience is not simply 'teeth-clenched' endurance. It is an attitude of expectation. The farmer patiently watches his barren ground because he knows there will be results. He has patience in his labors because there will be products of his labors.
So it is in the spiritual realm. God knows the final product of what is happening to us, and He would have us link patience to our faith."
Barb and I would like to thank everyone for lifting Erin and our family in prayer. If it were not for your commitment to prayer, we would have surely buckled under the pressure we have experienced. God IS our strength. We go to the throne of God with confidence that He IS in control of our journey and He has a wonderful plan for Erin, as well as, our family. Please pray that we are patient to experience His miracle unfold in our lives. Please keep the other BMT families in your prayers; Jordan is at day 43 and doing better; Brian is at day 6 and doing fine in spite of getting the mouth sores and such from chemo; Terrell is at day 128 and still is experiencing several problems; and all those I forgot to mention.
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Wednesday, August 3, 2005 9:27 AM CDT
Day +84
Greetings. Just a quick update. Erin had a "so-so" night last night. (If you ask Kevin, he'll tell you she had a lousy night. He was here with her at the hospital.) Her fever was down to 99.9 at midnight, but it spiked again (with a vengence) to 103.4 at 4 am. They tried giving Erin Tylenol, but it didn't do much, so they used ice packs to bring her temperature down. Her 5:30 am labs showed that her hemoglobin was down considerably from yesterday, so they repeated the labs (twice, in fact) to make sure they had gotten an accurate reading. Turns out, her hemoglobin is down -- but not as drastically as one of the earlier tests indicated. It's still a concern and they are trying to figure out what's going on. Her doctors said this morning they would like to send her down for a total body CT scan to see if anything shows up. Kevin and I both think this is an excellent idea. We are so anxious to get to the bottom of this!
After getting very little sleep last night, Erin woke up this morning in a pretty good mood. She ate a little bit, and then complained that her stomach was upset. So far, she's watching television and napping off and on. She could use a really good nap this morning to get her back on track.
So, for now, we're just waiting for her doctors to come back in and give us an update on what they think is going on, and what tests are planned for today. As you can imagine, Kevin and I would REALLY appreciate your prayers for Erin today. She's a tough little cookie, and aside from the fever and the hemoglobin problem, she's doing well. We just need some answers today.
Thank you so much for faithfully lifting Erin up! We are confident she will come through this just fine. This is just an anxious time for us as we await answers.
We'll try to update this page again as soon as we have something to report. Thanks, again, for checking on us, and for praying for Erin's recovery! We love you guys!
- Barb, Kevin, Jess, Katie & Erin
Tuesday, August 2, 2005 1:40 PM CDT
Day 83
Thanks for checking on us. Erin slept very well last night but unfortunately woke this morning with a fever of 103. As a result, we phoned the clinic and they had us come in. By the time we arrived at the clinic, her fever had come down but only to 101.8. Since it had peaked at 103, they've decided to re-admit Erin into the hospital for a couple more days of antibiotics - just to be sure. If all goes well and they don't see any positive results from any of the cultures, she could be released as early as Friday if her fever goes away. Again, she's not showing any other symptoms, other than the fever, so the doctors continue to feel it's a virus that will have to just run it's course. They'll do a few additional tests to further confirm this. With this newest development, we'll have to see where that leaves us as far the her bone marrow biopsy or the potential of being released to come home next week. We continue to take it one day at a time and trust in the Lord for our daily needs. He's STILL in control.
Please keep Erin in your prayers, that this fever will finally go away (as well as whatever is causing it), that she will be on course to have her biopsy next week, and especially for her spirits. Having to go back to the hospital has been very hard for her to take, let alone having to go back for the second time. She seems a bit depressed, which is nothing like Erin. Pray that the Lord restore her confidence and joy today.
We'll keep you updated as we have a chance.
Until later. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Monday, August 1, 2005 6:18 PM CDT
Day +82
Thanks for stopping in to check on Erin. Today has been a pretty good day....so far.
Erin's temperature bounced around little over night, which stayed between 98 and 99.3 for the most part. They don't consider anything under 100.5 a fever. We met with the doctors a couple of times this morning and learned that all the blood cultures remain negative and that her chest x-ray and CT-scan of her sinuses were clear. The doctors have finally concluded that Erin has a virus that it will have to just run it's course. With that he said we could be released. YEA!! Erin was pretty happy about that. Since Erin's hemoglobin was lower, they did one final blood test prior to us leaving to confirm that her white cells, as part fighting off whatever bug she's has, isn't also killing off some of her new red cells as well. Since we haven't heard anything back this afternoon, we're left to assume that no news is good news. We're still scheduled to see Dr. Wagner on Thursday.
As anyone that has been in the hospital knows, you don't get much sleep in the hospital. As a result, when we arrived back at the RMH, Erin took a great nap (a couple of hours!). When she got up, she felt warm so Barb took her temperature and....you guessed it....it was back up to 101.3. We called and talked to the doctor on-call. He discussed it with another BMT doctor and they concluded that she has a virus and for us to go ahead and treat the fever with Tylenol. Normally they don't want to "mask" any fevers for threat of infection but in Erin's case, she's had several doses of IV antibiotics which are still in her system that would be taking care of any bacterial infection. We're to wait 4 hours and see what her temperature does. If it spikes again, they may have us come back to the hospital. Of course Erin doesn't want to go back so she cried and cried. We've assured her that we have to do what is best and can't take ANY chances at this point. She understands...a little bit. So we feel we're walking a tight rope this evening.
We want to thank all of you that have been lifting Erin in prayer that this fever will go away. We've felt the Lord's presence through all of this, and the peace and strength that you can only receive through the power of people lifting you in prayer. Tonight, please continue to lift Erin in prayer and that the Lord will touch Erin in a special way this evening to bring an end to this fever. That she may be fever free and have a restful sleep tonight. Barb and I find ourselves very anxious tonight until her fever is resolved and we're finding it very difficult to keep Erin positive. As always, please keep the other BMT families in your prayer as they continue their journeys.
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Sunday, July 31, 2005 8:22 PM CDT
Day 81
Greetings! Thanks for checking on us tonight. Erin remained in the hospital today. She actually had a pretty good day, but the fever persists. I was really hopeful that we had kicked it last night. Her temperature at 8pm was 98.5, and and at midnight it was 97.5. However, it was back up to 100.4 when they did her 4 am vitals. It has bounced around a little bit today, but it has stayed mostly in the 99's.
The doctors decided to do a CT scan to check for sinusitis this afternoon, and they changed one of her antibiotics. At this point, her blood cultures have all come back negative (though they will continue to monitor the cultures for another 4 days to see if anything develops. Usually, if there is a bacterial infection, it will show itself within the first 24-48 hours after the culture is taken.) We won't get the results from the CT scan until sometime tomorrow, but it looks like the doctors think the fever is related to Erin's cold. She has no other symptoms to suggest it's anything else. So long as her cultures remain negative, we're in pretty good shape. Technically, they don't regard a temperature as a "fever" unless it is over 100.4. With that in mind, we MIGHT qualify to leave the hospital tomorrow -- but I think we may, more realistically, be looking at Tuesday.
Once again, we are the boring room on our floor, which is good. Erin has spent the last couple of days coloring, watching Animal Planet and the Food Network, and snacking. Her counts are down a bit, but not alarmingly so. I think her system is just trying to kick this bug.
After being out of the hospital for 6 weeks now, it has been REALLY tough getting used to being in a tiny hospital room all day long again. I have a renewed compassion for Darlene & Jeff (Jordan's parents), Bill & Carol (Brian's parents), and Jan & Kenny (Terrell's parents). I had almost forgotten how the walls start to close in on you! Fortunately, none of the doctors seem particularly worried about Erin, and they have all kidded that we'll be outta there in a day or two -- but we're back to playing the waiting game once again. We've had a realtively bump-free ride so far, so I cannot complain about this little bump. I am so thankful for how well Erin has done. In spite of this little detour, it's still been an amazing journey!
Tonight, we would greatly appreciate your continued prayers for Erin's complete recovery. In particular, we'd be so relieved to see this fever go away. Jordan's counts have improved, and he's feeling better today. We're thankful for that! Brian is Day 2, and I can still vividly recall those early days. I pray that his "bumps" will be few and far between on his path to healing. Terrell (who is now nearly our next door neighbor on 5B!) is still recovering from his surgery. His mom posted on his website that he has a low-grade fever and they are watching it very closely. I know they would appreciate your prayers tonight.
Thank you, again, for your incredible support! Your prayers give us hope and peace to get through these times.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Saturday, July 30, 2005 8:25 PM CDT
Day +80
Good evening and thanks for checking in. Erin remains in the hospital tonight. It's not quite the way we planned to spend day 80. She's continued to run a fever all day. It's bounced around from as low as 98.9 up to 101.3, but never really got to normal. She's had a good appetite, has been drinking plenty of fluids and had no problems with her medications. The only thing that's keeping us there at this point, is the fever.
By the time we got checked in last night, went through the battery of family history questions (like anything has changed since we were just there 6 weeks ago), went through all her medications and the times they are taken (which was just reviewed the previous day in the clinic), got a set of vitals and blood draws (a lot of them including blood cultures to test for bacterial infection), and a urine culture, it was 1:00am before they got her IV antibiotics going and she was able to relax to go to sleep. This morning, she was wide awake at 6:00am, just in time for us to enjoy the sunrise together and then she was hungry for breakfast.
They continue to give her two different antibiotics, roughly every 6-8 hours. These are general antibiotics that cover 99% of known bacteria. As of today, the cultures are still negative but they will continue to grow in the lab for at least 48 hours (they're actually allowed to grow for 5 days total). Talking to the doctors this afternoon, they seem to be fairly sure (as best they can determine from the symptoms) that it's a viral infection (a cold) that her body is fighting off. With her recovery status/progress and her current counts, they said this is a good sign that her body is doing exactly what it's suppose to be doing. In their opinion, IF she can shake this fever AND the cultures are still negative tomorrow, there's a very good chance that she'll be released on Monday. IF she should still be carrying a fever, it may extend our stay until they can determine the cause. The biggest fear at this point is infection being caused by her C-line itself. Since the C-line is inserted directly into an artery near her heart, infection residing in the line itself could quickly spread the infection throughout her body. They said that this can be common due to the length of time the lines are in. Jared, one of the other BMT patients, had this happen and his C-line was removed and a new one inserted. We would prefer not to have to do this at this late date in the process.
Erin was very specific in her request this evening. She asked me, "Dad, when you update the web, have everyone pray that my fever is gone tomorrow morning and it doesn't come back and I'll get out on Monday." (Remember what Christ says about the faith of a child.......well there it is) That IS my request tonight. The Lord is still on the throne and still in control and He hears our prayers. Erin believes that with all her heart tonight and I believe that too. I can't wait to update you on the miracles that are about to happen!
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Friday, July 29, 2005 7:40 PM CDT
Day +79
Well, tonights entry is going to be brief. Erin had a fair day today. She woke up feeling pretty good, but she got sick to her stomach mid-morning. She took a good nap and when she woke up, she felt better, but still not 100%.
When we met with Dr. Wagner two weeks ago, we told him about her close-brush with a fever (she had all the symptoms of a cold, and did run a low-grade fever, but in the end they did not admit her to the hospital because her fever only went over 100.5 degrees for about an hour). At that time, he questioned whether Erin had ever really gotten over the sinusitis that she had when we left the hospital. He said it is not uncommon to require two rounds of the antibiotic to kick it completely. Today, unfortunately, we've been flirting with that 100.5 number off and on all evening. Just a short while ago, Erin's temperature got to 101.3, and we called the hospital. While they are not worried (the Pediatric BMT fellow said he really felt it was not necessary for Erin to be admitted) the BMT doctor said he wants to bring her in for about 48 hours to give her some antibiotics and do a blood culture. To be honest, I am relieved. Her temperature has actually gone up this evening (it ran in the 99.0 degree range throughout the day), and I'm afraid we would be pacing the floor all night trying to keep an eye on things. I'd rather have the experts take a look at Erin, give her a round of antibiotics, and send us on our merry way.
The bug Erin is fighting today is almost identical, symptom wise, to what she had about two weeks ago, so I'm not too worried at this point.
SO ... we're heading to the hospital as soon as I post this. Erin will likely be admitted for 48 hours. I am thankful that they will be taking a look at her. She has done so well that they are inclined to cut her a break when she's got symptoms, but I'd rather err on the side of caution. It's just not worth the risk that it could be something other than just a cold.
We will try to post an update tomorrow, but we won't have access to a computer in the hospital. We'll do our best! Tonight, we would greatly appreciate your prayers for Erin. We are hopeful this is just a mild cold, and that her blood culture will come back negative. Thank you for checking in on us tonight, and thank you, in advance, for your prayers. You don't know what a comfort they are to us!
Until next time...
- Barb, Kevin, Jess, Katie & Erin
Thursday, July 28, 2005 8:50 PM CDT
Day +78
Good evening and thanks for checking on Erin's progress. It was another beautiful day here in Minneapolis...in more than one way! Where should I begin?....... (this has the makings to be a long one)
If you have been following our updates, you're probably aware that we had a visit to the clinic today, meeting with Dr. Wagner for the third week in a row! Since Erin's has been doing so well, the last two weeks we have only had to visit the clinic once a week. Today's visit could not have gone any better. ALL of Erin's counts today came back in the "normal" range!! Praise God! Praise God! Praise God! Her WBC was 7.6; her Hemoglobin was 11; and her Platelets were 155,000!! We have never seen counts like these for as long as we have been tracking her numbers (since 2003). To give you an idea of what we were dealing with prior to coming to Minneapolis for transplant, six months ago her counts were running 3.3, 7.5, and 13,000 respectively. All well below the normal ranges. During this same time period, Barb and I were giving Erin three injections of GCSF (a growth factor to promote her WBC & ANC). For us looking back at this, today's counts are nothing short of a miracle! Erin being diagnosed with FA as a result of bruising, finding out about the BMT research in Minneapolis, meeting Dr. Wagner, coming to Minneapolis for transplant, the availability/use of the cord blood for transplant, her remarkable progress, all carry the fingerprints of a plan straight from the hand of God himself. Remember the verse I've quoted many times since we began this journey, "I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11) That's something you can hang on to and trust in! Praise God for His promises!
If you think that's good....there's more! Having an audience with one of the premier doctors in the field of pediatric BMT, who happens to also specialize in the treatment of Fanconi Anemia, is quite a humbling opportunity in itself. To see him three weeks in a row (not to mention already scheduled for the next two weeks as well) is almost unheard of (do you see another glimpse of God's plan in there?). All hype aside, Dr. Wagner is a wonderful person. He takes the time to answer ALL your questions, not matter how silly they may seem because he knows/understands family, how important this is and how stressful it can be. Today, he was so confident in Erin's status that he wrote up his notes of her visit prior to even seeing her! He then said, "Well, let's take and look and confirm my notes! Don't make me a liar Erin." In general, he said she is doing great. While she was slow to engraft, she has made such strides in her recovery (God's plan again). When asked if he had confirmed the Absolute CD4 count (if you'll recall this count reflects her immune system level, which was much higher than would be expected at the day 60 biopsy), he said examining Erin and reviewing her status, he had no reason to question the accuracy of the number (there's God again!). Then we dropped the million-dollar question, based on Erin's progress, when did he think we could plan to head home? His answer was, barring that she stays fever-free, no GVHD (Graft-vs-Host Disease), and no infections, we would have our final biospy between day 90 and 100. After that, we could go home! Understand that our day 100 is August 19. As it turns out, he's scheduled to be out of the country that week, so we're going to have to move everything UP one week (there's God again!)! This means we have our regular appointment on Thursday next week, her final biopsy early the following week, a follow up visit with him on Thursday August 11, and if there's no complications......WEEEE'RRRRE OUTA HERE!!! We'd probably plan to head home very early on August 12 drive straight through. This is all very preliminary and can change at the last minute if something should develop. We pray that we stay the course and Erin continues to see smoooooth sailing!
In closing tonight, I wanted to share from my devotional today, which is written by Billy Graham. It seems to summarize so much of what we have learned since beginning this journey. The scripture comes from Joshua 24:15 which reads, "Choose this day whom you will serve." Billy Graham writes;
"When we face decisions, we need to remember that God hasn't left us in the dark, nor is He uninterested. God loves us, and He wants what is best for us. He has a perfect path in life for us, and He wants us to choose it instead of the wrong paths that Satan would tempt us to follow.
Even when our way seems unclear, God gives us light. He gives us His Word, the Bible - and many of our decisions would be much easier if we only knew its moral and spiritual principles. He also gives us wisdom (sometimes through other people) to undertand our situation, and He gives us the Holy Spirit to guide us.
Never make a decision without committing it to God and seeking His will. He promises to guide you - and He will."
What else can I say but AMEN!
Tonight we ask for continued prayers from Erin. That she keeps progressing and that she stays complication-free. Please continue to pray for Jess and healing for her back as she starts physical therapy. We have some other praises to pass along. Jordan is doing better and making some positive progress! Please keep him in your prayers (to Darlene & Jeff - hang in there!) Terrell is still in the hospital but is doing better and continues to make progress. Jared is back out of the hospital and doing better. Brian, who just turned 17, had his final chemo treatment yesterday, a day of rest today and will have his transplant tomorrow! (Happy re-birthday Brian!!) Our prayers go out to Brian and his parents, Bill & Carol, as they start the process to recovery. Please lift all these wonderful families in prayer. I would also ask a special prayer for Sidney, another FA BMT patient who had her BMT in February and went home to North Carolina in early June. She was due to be coming back to MN before we left for her 6-month checkup and we've heard that she's has a CMV virus and will have her C-line re-inserted and be on IV antibiotics for 6-8 weeks. We pray that God will touch Sidney and bring comfort to her family as they hit this little bump in their journey.
Until tomorrow. We miss you all so much and tonight we're one step closer to being there. As always, Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Wednesday, July 27, 2005 8:40 PM CDT
Day +77
Well, it was another great day in Minneapolis. I really don't have much to report tonight. Erin decided that she wanted to participate in the "Summer Activity" that was planned for the kids at the RMH today (candy making). They had a cookout at lunchtime, followed by the candy making session. It was nice to be around the other kids again, and Erin had lots of fun. In spite of Erin's great test results recently, I still found myself hovering around her through the entire exercise. I made it a point to sit between her and any of the other kids so that she didn't pick up any unwanted germs. I think I am bordering on paranoia right now -- but hope that maybe that's a good thing. She took a good nap before dinner, and as I type this, she's upstairs watching a movie with Kevin and Katie. I find that these slow, quiet days give me a lot of peace. It was a very good day.
A special "hello" to Roger and Becky Watson tonight. They have faithfully been keeping up with Erin's progress and sending her encouraging cards and messages throughout her treatment, in spite of the fact that they have been struggling with a serious illness in their family all the while. We are so touched by their concern, and so appeciative of their prayers. What an amazing family they have! We are so thankful for the good reports we are getting on their recovery. We serve an awesome God!
Jess got her MRI results back today, and there does not appear to be any serious damage to her back (thank God!). She will start physical therapy to help relieve the pain she has been experiencing. But, ... we found out today that she has strep throat. The poor kid can't win for losing! Please keep her in your prayers tonight. She'll be getting ready to leave for college in the next couple of weeks, so I know she's anxious to get through all of this and feel better.
More good news on the other bone marrow transplant kids tonight: Jordan is improving, and we are thrilled. He has experienced his share of "bumps" lately, and we are looking forward to him making big strides in the days to come. His doctors are pleased with the direction things are going. Brian finished his chemo today (whoopee!) with very few side affects. His transplant is on Friday, and we are looking forward to hearing of his amazing recovery. Jared was readmitted to the hospital over a week ago, but should be released today. The doctors had to remove his central line and replace it (they determined the central line was the source of his infection). We are praying for his continued recovery tonight. He's doing much better. Terrell is making remarkable progress after his gallbladder surgery last week. It is absolutely incredible that he has come through two surgeries without any complications. He is quite a remarkable little boy, and if you're looking for a "hero", I'd like to nominate Terrell. He's been in the hospital for almost 130 consecutive days, but he doesn't complain. He is patiently waiting for his turn to go home. Bless his little heart!
That's it from up North. Another beautiful day. As always, thank you for your continued prayers for Erin's recovery and for all of our new "extended" family up here. We sense the presence of God, and we give thanks for each good report. It is such a priviledge to watch God work in the lives of each of these families. It's really very exciting, and we wish you were all here to share it with us.
We are keeping you close in our hearts tonight. Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, July 26, 2005 8:38 PM CDT
Day +76
Good evening and thanks for stopping by. It was a wonderful day here in the Twin Cities. The temperature dipped to a high of 71 degrees today (of course Barb and the girls wore sweatshirts because they were "cold"...I can't win). Wish we could send a little relief back home!
We had a little excitement today. The RMH house manager called us this morning and asked if our family would be willing to be part of a promotional campaign. Since the Ronald McDonald House is funded by pledges/contributions, each year they choose a few families that have benefited from the organization to be featured in one of their publications for a pledge drive. We were chosen as one of the families. It was really fun and the girls thought it was like some big magazine photo shoot. We'll get copies of the publications and copies of some of the pictures. If nothing else, we'll end up with a family photo out of it!
Other than the photo shoot and the 70 degree weather, we had another uneventful day. Erin slept well, ate well (her appetite continues to grow) and took all her medications with no problems. All in all, it was a great day! As Barb mentioned last night, we find ourselves just sitting and watching her play and reflecting back only a few short months ago, we were sitting and watching her for a very different reason. We were torn by a decision that we had to make, a decision that would impact her life forever. Now, by the grace of God, we looking at a child that is making such progress that you can physically see the difference in her. Praise the Lord!! This IS a journey and not a sprint and we're not at the finish yet. There are many more days that we'll have to visit clinics, take medications, and have tests done but, the Lord IS in control and we praise Him for everyday that He has given us together. We know that the Lord is bringing us through this journey, one day at a time, for a purpose. My devotion today was Proverbs 3:5 says, "Trust in the LORD with all your heart and lean not on your own understanding." God knows everything; we don't. Based on what we know about God's character, as demonstrated by the Cross, we can trust that He is doing what is best for us. This brings me to one of my favorite passages, that I've quoted in updates previously, but gets me through those times when we feel we can't go on or the whole world is against us and we don't have a friend. It comes from the book of Jeremiah 29:11, "For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." WOW! He knows everything about me AND has a plan just for me! What an awesome God we serve.
Please continue to keep Erin in your prayers and that she may continue to have many more "boring" days. She's due back in the clinic on Thursday. Also keep Jessica in your prayers, especially tomorrow, as she has a follow up appointment to review the MRI of her back, which is still causing a lot of discomfort. We especially ask for prayers for Jordan Brunson and his mom/dad, Darlene and Jeff. Jordan is another FA BMT patient that has hit a few bumps in his journey and just needs that special touch from the Lord to put some worries to rest. Continue to remember Terrell, Jared, Nate (now at home), and Brian as he has started his chemo treatments. These are all special families to us and we all share in our victories as well as the bumps in the road.
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Monday, July 25, 2005 7:54 PM CDT
Day +75
It's hard to believe we're at the Day +75 mark. In spite of everything, the time has gone remarkably fast. Today was another quiet day at the Ronald McDonald House. I have come to really appreciate these days. Early on, these long, quiet days were maddening for Kevin and I. We are accustomed to running 7 days a week, and having a "To Do" list as long as your arm. It has only recently dawned on me that these quiet days are to be celebrated. Boring is extremely good, and I am treasuring every boring, quiet day.
This afternoon I caught myself just staring at Erin while she was playing in the bedroom. As a parent, you see things with your mind sometimes that your heart just won't accept. Long before we ever loaded up the truck for our trip to Minneapolis, I knew Erin was very sick. I think most of us could see it in her eyes. She was always very pale with those dark circles under her eyes, and I could tell her energy level was not what it should be for a child her age. But in my heart, I could not bear the thought of what she would have to go through to get "well." The cure was nearly as bad as the illness, and in addition to that, there were no guarantees. But as I looked at Erin today, I am filled to overflowing with pure joy. She is a different child. Her coloring is beautiful, her smile is dazzling and her eyes are bright. The transplant was not easy, and I wouldn't care to go through anything like this again in my lifetime -- but I am SO glad we came. I am so thankful for the blessing of Erin, and Katie, and Kevin. Our family (both immediate and extended) is forever changed. Every single tomorrow is precious and I look forward to each new day with excitement. I am completely content to sit with my precious family in a tiny two-room apartment here at the Ronald McDonald House for now. These are great, boring days!
Our glucose test went just fine this morning. There will be no results from this test to share. We agreed to participate in a study to help the doctors accumulate information on diabetes in FA patients. The whole test took about 30 minutes total, and we were back at the Ronald McDonald House by a little after 9 am. Our next clinic visit is on Thursday. We have no plans for tomorrow. The temperature is going to drop significantly, so we may venture out at some point. I think it's only supposed to be 72 degrees.
Well, that's it from Minneapolis. Thanks to my friends at work for sending the cookie bouquet. It was deeelicious!
As always, we are holding you close in our prayers tonight, and appreciate your prayers for Erin's recovery and for the other kids here. We miss you, and can't wait to get home.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Sunday, July 24, 2005 6:45 PM CDT
Day +74
Good evening and thanks for checking in. Not much to report tonight so the update is a little brief.
The weather was a lot nicer today with lower humidity. As a result, we went out for a little excursion to...Walmart!! Boy, I tell you, you know you're living on the edge when a day out to Wally-World is a big deal! It was a nice little drive and did get us out of the RMH for awhile. We stopped and picked up some lunch on the way back to the RMH (you guessed it...Taco Bell...not sure how much more of that MY stomach can take). With us only having to go to the clinic once a week now, the days are starting to get pretty long, as demonstrated by today's big outing.
Erin had another great day. She's eating very well and has hopefully picked up that little bit of weight she lost. Her medications are getting easier as she's actually taking responsibility for getting them down in a timely manner. She knows what time each set of pills start and then we give her an amount of time she needs to have them done. She spaces them out and usually has them completed within the time period. I think it's helped giving her the responsibility because now she feels as if she has a little control over what's going on.
Erin has a glucose test tomorrow morning at the hospital. We need to be there by 8:00am which could prove to be a bit of a battle since the girls have gotten in the habit of sleeping until 9:00 or 9:30 (or later) everyday. It should be an easy test as everything can be done through her C-line.
Again we just want to thank everyone for their continued prayers and words of encouragement. We have been blessed beyond comprehension. May the Lord continue to touch Erin in such a powerful way that the doctors remain amazed by her progress. Please continue to keep Jordan in your prayers, as well as, Terrell, Jared, and Brian who started his chemo treatments today.
Until tomorrow. We miss you all terribly and can't wait to get on the road headed toward Ohio. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Saturday, July 23, 2005 8:15 PM CDT
Day + 73
Happy Saturday! Hope things are going well at home. Not much to report from Minneapolis today -- it was a very quiet day. At about 10:30 this morning, a storm blew through here and if you looked outside the window, you would have guessed it was the middle of the night. It stayed overcast all day, and it was hot and humid. We're hoping for a clear, cooler day tomorrow so we can go outside for a little while.
Erin continues to do well. Her appetite is great, and she's taking her meds beautifully. She and Katie just played in our room most of the day today. Tonight, they have borrowed a couple of movies from the RMH office, and we've popped a little popcorn. It will be a nice family night.
Kevin talked to Jessica this afternoon, and her MRI went well. She has a follow-up appointment with her doctor on Wednesday, and is expecting to get results from the test at that time. We are really hoping for a good report when we speak to her next week. We'll keep you posted.
Tonight, I'd like to ask you to pray for a very special 12 year old boy we have come to know and care very much about during our time here in Minneapolis. His name is Jordan, and he has the same illness as Erin. Jordan received his transplant about a month ago, and he is struggling tonight with some of the "bumps" they tell you to expect as you go through this process. The doctors recently discovered that Jordan has some form of infection in his lungs, and they are doing lots of testing to identify the infection and fine-tune his medication to treat it effectively. In the meantime, Jordan has become discouraged. I so sympathize with Jordan because I saw Erin go through the same thing during her stay in the hospital. This treatment is unbelievably difficult for the kids -- both physically AND mentally, and after so many days of being confined in a tiny hospital room, it finally takes its toll on the kids' spirit. Please say a prayer for the Brunson family tonight -- that the doctors will get Jordan's medicine squared away so that he'll get exactly what he needs to take care of this infection quickly. I would also ask that you pray for safe travels for his brothers, as they will be flying home tomorrow morning.
I spoke with Terrell's mom tonight, and she said that he is improving daily from his surgery late last week. We are hoping that they have found the source of much of Terrell's problems lately, and that he will now begin to take huge strides in the right direction. With a little luck, Terrell should be heading back to the Ronald McDonald House very soon.
So many children -- so many needs. We appreciate your faithfullness in lifting Erin, and these other children, up in prayer night after night. These prayers are making a difference, and I cannot thank you enough for your support. I am seeing the results from our prayers first-hand, and it's wonderful and amazing to see!
I guess I'll close here. Have a great evening.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Friday, July 22, 2005 8:10 PM CDT
Day +72
Good evening and thanks for checking in. Erin continues her amazing recovery pace. We're staying close to the RMH just to be on the safe side and not take a chance on exposing her to anything we don't have to. Some of the medication she is on is very sensitive to sunlight. With it being so hot and humid, we tend to stay inside to play it safe.
As Barb reported last night, the doctors are thrilled with her progress and in their exact words, "Her progress is REMARKABLE." But then, since God is in total control and He's not bound by our human constraints, why would we think anything less! It's a funny thing that you pray and pray and pray for something and then when God answers it, you're amazed. The Bible says that we should pray with full confindence that God hears our prayers and WILL answer them. Praise God for answered prayers for Erin!!
Her appetite is finally coming back....and with a vengeance!! She still doesn't eat very much at any one sitting but she tends to "nibble" all day long. Barb and I are thrilled that she finally has some interest in food since in her last couple of clinic visits she's lost a little weight (and we all know she doesn't have any to loose!). This is normal in the big scheme of things since her taste buds and stomach still aren't quite right from the chemo. A BIG thanks goes out to Aunt Georgette for sending the care package of canned Skyline Chili. Erin was thrilled when it came and decided she felt up to having it today for lunch. It brought a little bit of home to Minneapolis. We all really enjoyed it!! Erin liked it so much that she said we're stopping at Skyline on the way home.
That's about it for tonight. She's doing GREAT! We're only going to the clinic once a week now so we don't have an appointment until next Thursday. She's going in for a glucose test on Monday in another part of the hospital as part of a data collection study on how FA patients process/tolerate sugars before and after transplant. Barb and I have decided that as long as it's not an invasive procedure, we'll do anything we can to help future treatment of FA.
We ask for continued prayers for Erin and for Jess as she has her MRI tomorrow. We also ask for special prayers tonight for Jordan, another FA patient. The doctors recently discovered that his body is retaining fluids so their doing some tests to determine the cause. They're afraid that it could be leading into pneumonia. Please keep this young man and his parents, Darlene and Jeff, in your prayers (if you wish, you can leave them a message on their website at www.caringbridge.org/ut/jordanbrunson). Barb and I have come to know and appreciate this family so much. Also remember Terrell, we don't have an update on him tonight but we know that he's still struggling through some issues in the hospital; Jared is still in the hospital but doing better; Devin and all his family is going through right now; Brian, another FA patient, and his parents Bill and Carol as he had his TBI (total body irradiation) today and starts chemo on Sunday; and special prayers for our little buddy Nate (4 years old going on 40), an FA patient from Kansas who'll be heading home first thing tomorrow morning. We'll sure miss Nate and his Daddy, Stan. May God truly bless each one of these families and those we not have mentioned tonight. May they too experience the peace and healing touch that only comes from an awesome God!
Until tomorrow. Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Thursday, July 21, 2005 9:27 PM CDT
Day +71
Wow! What a day we've had. As I started to type this update, it occurred to me that I begin most of my updates anymore with, "Another good day at the clinic..." and today is no exception.
We got the results from Erin's bone marrow biopsy today. Dr. Wagner is apparently going to be doing a rotation in the clinic, and we'll be seeing him once a week (for the time being, anyway). Today, he gave us the biopsy results, and he was THRILLED with what he saw. He told us that while Erin's counts were slow to come in, they have been remarkable in every way since then. In particular, one count they pay close attention to is the "Absolute CD4" cell count. This count tells them how well Erin's immune system is functioning. In the vast majority of BMT patients, the Absolute CD4 count at this point in the process is between 50 and 100. This is the result the doctors expect to see at the day +60 aspiration. Erin's Absolute CD4 count from her aspiration last Friday was 551. That's right -- FIVE HUNDRED AND FIFTY ONE. Dr. Wagner said that based on that number, her immune system is functioning at a normal level. He said she really does not need to wear a mask with a count of 551 -- but he could not give the okay to stop wearing it a good thing!). With today's improvements the doctors said she could start having some popsicles or Boost nutrient drinks. We don't want to push switching back over to food until we're assured that the stomach inflammation is healed. The last thing we want is to bounce back and forth again. So for now we've opted to take it very slow. Patience....The Lord is in control.
In last night's update, Barb also mentioned the baby down the hall from Erin's room. I spoke to one of the nurses this morning and, while she's not supposed to give out information on other patients without parental permission, she did say the baby was doing much better. She did tell me that the sores in the mouth/throat caused by chemo also cause swelling. In a child Erin's size, there's room for some swelling without causing further complications. She explained that in a baby there is just no room for any swelling without it causing other issues. Apparently this is what happen and, I assume, they have everything under control for the time being. Please continue to pray for this little one.
Tonight, while we ask you to continue to lift Erin (as well as the other kids in the BMT unit and their families) in prayer, Barb and I want you to know that we are lifting each one of you in prayer. That the Lord continues to use all of us in powerful ways to bring about change in the world we live in. So many people have said that we have been such inspirations to them but Barb and I are here to tell you that the Lord is to receive all the credit and the glory. In our daily journals, Barb and I try to put into words what the Lord is revealing to us, many times through all of you. As we've said before, the things that we have been shown and have experienced through this journey has changed our lives forever, making us a stronger witness for Him. "Here am I Lord, use me"
Until tomorrow.....Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Tuesday, June 7, 2005 7:33 PM CDT
Day +27
Greetings, and thanks for checking in on us. Still no change in Erin's white count -- but it's coming. I can feel it!
Erin is dealing with her setback from yesterday pretty well. She's had stomach pain today, but most of the time it was hunger pain rather than genuine stomach pain! (Bless her heart!) Her nurse practitioner also reported that her liver ultrasound looked good. What a relief! Going back on IV nutrition and IV meds is only a mild setback. Most kids need to remain on IV nutrition because they cannot eat due to the sores in their mouth and throat. Since Erin is not having any problems in those areas, she should be able to switch back to oral meds and regular food as soon as the inflamation in her gut improves. Her doctors hinted today that they might lighten up the "no eating" restriction some if Erin continues to do well tomorrow. Kevin and I want to make sure we don't rush back to a regular diet and oral meds until we are certain we have made some major progress in healing the sore area. Otherwise, we're afraid we'll end up in the same situation a week from now, and we really don't want to get on that rollercoaster. We're just going to ask a lot of questions and make sure we get it right so that, hopefully, we won't be taking any more backward steps.
Erin was in good spirits today. She ran a fever off and on, but she was alert and active too. Overall, she had a pretty good day.
Mom and dad made it to Minneapolis this morning with no problems. They couldn't get into their hotel room right away, so they drove around getting the lay of the land here in town. We had a nice visit with them here at the hospital, and we also took them on a tour of the Ronald McDonald House. It was such a treat for Erin to see them! These last few weeks have been tough on her, so it was comforting to have Grandma and Grandpa here.
On a more somber note, the morning got off to a near tragic start here at the hospital. Kevin spent the night with Erin, and as usual, I couldn't sleep back at the house so I headed over to the hospital at about 7:15 am. There is a darling baby girl on the BMT floor, and we pass by her room each time we come and go from Erin's room. Her family has taped up a dozen snap shots of the baby on the window to her room, and I've stopped several times to admire how absolutely precious she is. When I arrived this morning, there was a huge commotion outside this babies room, and her door was standing wide-open (a HUGE no-no on the BMT floor!). I knew something terrible was going on. When I passed her room, there were at least 5 nurses surrounding her crib, and one of the nurses looked back over her shoulder and yelled for a nurse in the hallway to page a particular doctor "stat". I think what was most upsetting to me was the look on the faces of several of the nurses we have come to know very well over the last several weeks. These nurses are usually cheerful and lots of fun -- but the desperate look on their faces spoke volumes. Of course, I didn't want to linger in the hallway, but I hesitated long enough to lift the baby up in prayer. I was sick about what I had seen for the rest of the day. What a helpless feeling that was! I don't know what the status of the baby is this evening, and I haven't had the courage to ask any of the nurses. I'm not even sure they would be allowed to tell me anything if I asked. I did notice that there appears to be some activity in her room tonight, so I regard that as a good thing. I know without a doubt that the family of that darling little girl would be thankful beyond measure for any prayers you might be willing to lift up on her behalf. Her life has barely begun, and she is facing challenges tonight that few of us can comprehend. When I got to Erin's room this morning, I wasn't concerned with what her white count was. I just wanted to hold her in my arms. I don't know how these nurses cope with everything they see here day in and day out. I simply could not do it.
Your continued prayers for Erin's total recovery are appreciated more than you know. She continues to work hard, and her attitude is incredible. I love her so much I sometimes think my heart is going to burst. You cannot imagine the relief we will feel when her counts begin to go up. We simply cannot wait!
We are lifting each of you up in prayer tonight. We know that we are not the only ones with worries, heartache and fear. Our prayer is that God is richly blessing each of you, and meeting your needs each day. We love you, and we can't wait to see you all again!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Monday, June 6, 2005 8:10 PM CDT
Day 26
Good evening friends and thanks for checking on us! Today started out with few changes. But as the day progressed, it became more and more frustrating for us.
Erin's white cell count remained unchanged this morning (still .2). She still had a fever, though much lower than yesterday. Her stomach was still distended and she continued to have pain, though again, it seemed less than yesterday. She ate a fairly good breakfast (first time in a few days), and had a good lunch (again first time in a few days). The lab also was able to isolate the bacteria and they changed some of her antibiotics to take care of it (we thought...now we're getting somewhere!). Then the doctors came in.
They had finally decided that since she was still running a fever and complaining about the stomach pain (which we've done everyday for the past couple of weeks), they would send her down for a CT scan to see what was going on.
The results of the CT scan showed that Erin had quite a bit of inflammation in her stomach and intestinal track, another result of the radiation/chemo. Their recommendation was to put her back on the TPN (IV nutrition), and reverting the majority of her medications back to an IV form. They even want her to restrict the amount of water she drinks! They basically wanted NOTHING in her stomach for a few days to a week depending on how she progresses. That may not sound like much but she had worked so hard to get where she was and now to move backwards is discouraging. Tonight she even complained that she was hungry and we couldn't give her anything. We had to wait until 8:00pm when they brought the TPN. It was so pitiful to watch her. Barb and I decided that if she couldn't eat, we wouldn't either! So the three of us sat here hungry together. (Now she has her TPN and she watching Food Network on TV...she's killing me!)
You have to understand that over the last couple of weeks we been told: wean her from the pain meds/don't use the button unless really needed ---> use the button as much as you want; reduce the amount available in her pain button ---> now she's pushing it too much; reduce the calories/push the liquids ---> reduce the liquids/push the calories. It's just so disheartening and frustrating for Barb and I to see her take three steps forward and then two steps back. We'd be concerned with all this back-and-forth if we didn't know that God is the one that is REALLY in control!! His timing is always perfect!
I'm currently reading a book written by Max Lucado (one of my favorite authors) titled "Traveling Light". The book is centered around the Twenty-Third Psalm.
"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever."
The first verse says it all, "The Lord is MY shepherd". Sheep can not fend for themselves, so they rely on the shepherd for their existance (food/water, security, a place to sleep, etc). Max Lucado brings out that if you can accept/claim the first verse, the remaining verses mean that as a result you have rest, salvation, blessing and a home in heaven. This section of scripture brings me comfort tonight in all the day's frustration. HE IS in control and that IS our peace. He's making! He's leading! He's restoring! He's guiding! The things the Lord reveals when your in the middle of trials!!
That's all for now. Please keep Erin in your prayers that we will continue to take those baby steps forward and the white cells come in soon. Also please continue to remember the other kids in the unit; Luke (doing better but still very serious), Terrell (doing better but has more hurdles), Jared, Devin, Sidney (soon to leave for home) and others.
Until tomorrow....Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Sunday, June 5, 2005 7:40 PM CDT
Day +25
Greetings! Another reasonably good day for Erin. She continues to run a low grade fever, but late this afternoon her doctors switched her antibiotic, which leads us to believe they have isolated the source of the positive blood culture from the day before yesterday. They told us once they were able to determine specifically what was causing her infection, they would select the best antibiotic to fight it. She is much better today than yesterday, so what they started her on has already begun to improve things. By tomorrow, she should be great!
Still no change in her white count, but it's coming. I can feel it! I got a very encouraging e-mail from Dr. Wagner today (he e-mailed me from Los Angeles this morning. The guy has the travel schedule of a rock star!) He was responding to an e-mail I sent him on Friday, and he basically told me to RELAX! He said everything she is going through is normal, and he's not concerned about her lack of engraftment. We've heard from a couple of Erin's nurses that FA patients tend to take longer to engraft (about 30 days) -- but once they engraft, they improve dramatically and are typically out of the hospital in just a couple of days. Wouldn't that be fantastic? Dr. Wagner will be back at the hospital tomorrow, and he's going to review her biopsy results and give us a call.
Kevin and I are beginning to feel the strain of these last couple of weeks. We're both sleep-deprived, which leaves us on-edge all day long. When you're exhausted, even little things seem big. Last night was my night to stay at the Ronald McDonald House, and I made it a point to be in bed by 10 pm. You can imagine my surprise when, at 12:11 am, our neighbor upstairs started running the vaccuum cleaner! I laid there for a couple of minutes trying to make excuses for why anyone would need to run the vaccuum at midnight, particularly when you're in an environment like the Ronald McDonald House. After a couple of minutes, I got upset and contemplated running up the stairs in my pj's and banging on their door (... not that they would have heard me with their vaccuum running!). I decided that since there's a good chance I would have to face these people at some other point during our stay, it probably would not be in my best interests to confront them in my pajamas. My next plan of action was to tunnel through the ceiling with a soup spoon from the kitchenette in our room -- but I decided that wouldn't work either (I'd need to vaccuum OUR room to get all the drywall dust up off the floor!). Anyway, while I was laying there debating my options, the vaccuum cleaner went off, ... and their television came on. I finally just grabbed another pillow and covered my head with it. Kevin probably got more sleep at the hospital than I did here at the house! (Oh well. At least we can laugh about it!)
Grandma and Grandpa Hafer are heading to Minneapolis tomorrow. It will be so nice to see another familiar face! Please pray for their safe travel up here. The drive up is no picnic -- just ask Mamaw and Papaw McKee and Jessica and her mom! We will look forward to our visit with mom and dad, and who knows? Maybe Erin will get released from the hospital before they have to return to Cincinnati! That would be an answer to prayer.
There isn't much to report. As always, thank you for your prayers for Erin's complete recovery, and for the rest of our family as well.
A special thanks to Mike and Linda Garman for all of their hard work in pulling together the benefit dance for Erin that took place on May 20th! We received a scrapbook that they put together from the event, and it was amazing! The pictures were great. We feel like we were there! Thanks, also, for all of your messages of encouragement. We are so blessed to have such incredibly great friends. You have no idea how much it means to us, and how much it has helped us as we continue on this journey of healing.
I think I'll close here. Erin is drowsey, and could use a good night of sleep!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Saturday, June 4, 2005 7:40 PM CDT
Day 24
Thanks for checking in!! Another rainy day here in Minneapolis. As we have said it before, we have one REALLY nice day and then 7 rainy ones. We're hoping that the rainy days will be over by the time Erin gets out of the hospital.
Today was another fairly boring day. Erin's counts remained unchanged this morning (which isn't all bad). The "bump" in the road that we're coping with now is Erin had a positive blood culture test come back yesterday. They draw a blood culture everytime a patient has a high temperature. The positive culture shows that there is a bacterial infection present. They immediately started Erin on antibiotics while at the same time, they continue to "grow" the culture in the lab to determine what kind of bacteria they're dealing with. Once this is accomplished, they can adjust the type/amount of antibiotics to best handle that particular bacteria. They should know the exact bacteria by tomorrow. As a result of this though, she has had quite a bit of stomach pain today (the doctors feel its probably a bacterial infection somewhere in her GI track). The pain caused some nausea, coupled with up and down fevers, so she didn't have much of an appetite most of the day. Our prayer is that they can get the bacteria under control soon so that she won't have to return to the IV nutrition. All in all, the doctors are still very happy with her progress and say that the positive culture is something they see all the time and can treat very easily.
She has been completely weaned off the continuous pain medication except for her "button", which she can use if she is uncomfortable and needs it. One of the medications she takes, GCSF, can cause the long bones (legs and arms) to ache. She has experienced some of this but for the most part, she just works through it. She's an amazing little trooper!!
As far as her counts, we have to remind ourselves to wait on the Lord. His timing is ALWAYS perfect! Barb and I were finding ourselves worrying more and more. We finally realized that we had "said" we turned this entire process over to the Lord but found that when we were getting discouraged we tried to pick up "some" of the pieces and deal them ourselves. He's reminding us that it doesn't work that way. I'm currently reading a book on prayer and it brought out a point that I never thought of before regarding getting discouraged. It explained that so many times we're looking for that "home run" answer to prayer. That exordinary miracle or intervention that can't be humanly explained. Because we're always looking for this, we often miss the little daily answers that often lead to the same end result. As a result, we sometimes miss out on seeing God working in our lives. Patience...be still and know that He is God.
Until tomorrow, please keep Erin in your prayers, as well as, the other kids in the BMT unit. For all of us, don't miss the Lord's many little blessings...He just maybe trying to show you something!! Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Friday, June 3, 2005 7:26 PM CDT
Day 23
Thanks for checking on us tonight. Today was another long, reasonably boring day. It began with a fever. Evidently, Erin started running a fever during the night, and it hung on into the morning hours. After a dose of tylenol, her fever went away for most of the day, but returned late in the afternoon. The doctors also reported that a blood culture they did on Erin yesterday came back positive. That means she has some sort of bacterial infection that will need to be treated. They assured us this was nothing to worry about. It's simply a matter of identifying what type of infection she has, and then fine-tuning her antibiotics to treat that specifically. They've already started her on some medication, and as the culture grows and they get more information on exactly what they are dealing with, they may make some changes.
Her counts remained the same, however, we were not expecting an increase today. Erin's doctors told us yesterday that, based on the preliminary results from her bone marrow biopsy, they were not expecting to see much of an increase in her counts until mid-next week. As Kevin reported last night, there were "baby" white and red cells in her marrow, but the number was still low, and it's going to take a while before there will be any discernable increase in her blood counts. The report of "baby" cells in her marrow was welcomed news -- but the fact that they were few in number was a concern. One of the doctors doing rounds today told us that when Erin's case was reviewed during a physicians meeting this afternoon, the doctors that are working here on the BMT floor expressed some concern about the cellularity in Erin's biopsy sample and her lack of engraftment to date. However, Dr. McMillian (an expert on Fanconi Anemia bone marrow transplants) said FA patients respond differently than other BMT patients, and she was not concerned at all. She said that Erin's condition overall was so good that she had no concerns whatsoever regarding Erin's engraftment. It will come. We just have to be patient. That was music to my ears!
Since Katie has been in Cincinnati, Kevin and I are both spending most of our time at the hospital. It's one thing to go back to the Ronald McDonald House to spend some quality time with Katie, but neither one of us cares to spend much time there by ourselves. As a result, we are both here constantly, and it's probably driving Erin crazy! Kevin was with her last night, and I could not sleep to save my life, so at 5:00 am, I got up, got a shower and headed to the hospital. Talk about a long day! Regardless, this is where I want to be.
Overall, I'd rate this a pretty good day. After a slow start, she perked up and she's been feeling pretty good since then. Her appetite is still good, though Kevin and I have to push her a little bit to make sure she eats enough to keep her off the IV nutrition. They have switched her to almost all oral meds, and they took her off her pain medicine today. They still have her set up with a "pain button" she can push if she develops any pain, and that is the only thing keeping her hooked to an IV pole. If we find that she's not pushing that button much over the next couple of days, they will probably discontinue that, and she will be "free" for several hours each day to roam around her room without being attached to anything. That will be absolutely fantastic. (It's the small victories that count right now!)
We are all going stir-crazy! I know Erin can't wait to get out of the hospital. We have read books, colored, crafted, painted finger nails, done puzzles, taken naps, played computer games and watched movies until we are blue in the face. There is only so much you can do to pass the time in an 11 x 11 room! She is working so hard to get better, and we are really proud of her. She is mature beyond her 8 years. Such a little trooper!
As always, thanks for your prayers and messages of encouragement. It's such a treat to check our messages throughout the day. They always make us smile!
We also appreciate your prayers for the other children on the BMT floor here in the hospital. There are some remarkable stories here that we will look forward to sharing with you when we get home. So many brave little souls!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Thursday, June 2, 2005 8:14 PM CDT
Day +22
Thanks for checking on us. Day 22 and all is well....but still no change in her counts.
Erin's white cell count remains at .2 (200). I can't tell you how tough it has been to see her ahead of the game in so many areas and still waiting on one of the most important parts...the white cell count! Erin has currently been taken off many of the medications. She's being weaned off the pain medication and should be completely off that by tomorrow afternoon. She has been moved to oral doses of all remaining medications. So finding out the white cell count is still unchanged really takes it's toll on you day after day and poor Barb, being our designated family "worrier", is about to pull her hair out! For me, as long as we're still within the acceptable parameters, I'm fine for now (but still very anxious!).
We have also received some very preliminary results from yesterday's Bone Marrow Aspiration. We have been told that the lab verified the presence of "baby white cells" and "baby red cells". Just the fact that the marrow wasn't empty and something had started, was GREAT news! The somewhat disappointing part was that even though there were new cells present in the marrow, the total cellularity (saturation of new cells) was still very low. What does all that mean? For now we wait....and WAIT....AND WAIT. The doctor was fairly sure we wouldn't see an increase tomorrow or maybe for the next week. He would expect to see some changes within the next two weeks and may even order another aspiration to confirm cellularity. If nothing were to change within the next two weeks, they would start getting a little concerned about what was going on (or in this case, NOT going on) and look at some other things (medication, additional donor cells, etc.). At this point, with what they're seeing, they don't have any reason to think that she WON'T engraft, it's more just a question of WHEN. The doctors continue to tell us that every bone marrow transplant patient is different, especially FA bone marrow transplants using cord blood. Even though they are somewhat unpredictable, the cord blood transplants see fewer infections, which is a very good thing. So for now...we wait.
Patience is a funny thing. I was told once never to pray for patience, because the Lord may give you a situation to TEACH you patience. But I also think that patience is a part of faith. Psalm 27:14 says, "Wait for the Lord; be strong and take heart and wait for the Lord." Some view patience as being indifferent or passive but I see it as a deliberate stance. In the book of James, part of which Barb quoted in yesterday's update, we're shown that there is a specific succession of items that work together: suffering, perserverance, and blessing. Suffering enters the believer's life; perseverance is the believer's response; and blessing comes from the Lord.
I didn't mean for this to become a sermon, I'll leave that to Pastor Paul! I just know what I feel the Lord is reveiling to us on this journey. I look around at what we're being required to perservere, and it seems so small in comparison to others in our BMT unit. I think of Luke and Terrell that have had to overcome serious hurdles in their journey and have many more to overcome, but their faith has not been shakened. Please keep them in prayers, as well as, the others in our unit. Please continue to pray for Erin's white cell count and a speedy engraftment. Most of all, pray for our perserverance. Your prayers and words of encouragement give us strength on a daily basis. Our faith remains in the Lord!
Until tomorrow....Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Wednesday, June 1, 2005 7:29 PM CDT
Day +21
Day +21, and still no change in Erin's white blood cell count. Her doctors and nurses continue to show little concern over the delay in engraftment, but I sense they are beginning to wonder what's up. They did a bone marrow aspiration this morning, and that will help them determine what's going on inside Erin's bone marrow. If they find lots of white cells being produced in there, they will know it's just a matter of time before her counts go up. Unfortunately, we won't get the results from todays aspiration for 5 days. By that time, God willing, we will already be enjoying a big jump in Erin's white count! I have to admit, with each day that passes, my level of anxiety goes up. Erin is tired of being in this little hospital room, and a jump in her white count would lift her spirits, I'm sure. They are telling us now that once Erin's counts go up, they will unhook her from her IV pole, and she will be permitted to leave her hospital room. As I've said in previous entries, Kevin and I leave this room several times each day. Erin has not left the room in nearly a month. Not even once. I cannot imagine what that must feel like. In spite of everything, she finds numerous reasons to laugh each day, and it's music to our ears. Talk about making lemonade out of lemons! She's amazing.
She continues to eat well, and she is completely off the IV nutrition she had been receiving. The doctors are very impressed that Erin has achieved this in such a short time. The majority of BMT patients leave the hospital still requiring IV nutrition. Her doctors said they can't imagine there being any problems in Erin's marrow because of how well she's doing otherwise. They think her new cells are just stubborn "engrafters." If I sit and ponder things for long, I succomb to panic, so I just sit and look at my bright, bubbly 8 year old as she's coloring in her bed. How can she be doing so well if the cells are not in the process of engrafting?
It goes without saying that your prayers would be greatly appreciated tonight and in the coming days. Our church at home is conducting a prayer service for Erin tonight. It is such a comfort to us to know we have the support from so many family members and dear friends back home.
"And their prayer offered in faith will heal the sick, and the Lord will make them well." James 5:15
My bible says that this verse of scripture refers to the faith of the person praying -- not the faith of the sick person. When I read it this morning, it was a wake-up call for me. My faith has been put to the test in recent days. When I'm tempted to let anxiety overtake me, I simply remind myself that God has not let us down thus far, and he will not let us down in the future. I will offer my prayers to him in faith, and He will respond. What an awesome promise that is!
Katie is enjoying her time back home, but I miss her terribly! I'm thankful she's getting this opportunity to visit and have some fun. She has certainly earned it. If you see her, please give her a big hug from mom, dad and Erin!
That's all for tonight. I pray that tomorrow evenings posting will contain wonderful news regarding Erin's white blood cell count. Thank you for your faithfulness in praying for us. We could not get through this without you!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Tuesday, May 31, 2005 4:23 PM CDT
Day +20
Greetings! We are updating Erin's page really early tonight because they're making some upgrades to the Caringbridge website, and the system will be down from 8 pm to Midnight tonight.
Another beautiful day in Minneapolis. When it's nice here, it's REALLY nice. Unfortunately, we get one nice day for every 7 gloomy days. Very frustrating! It's actually no bother. We'd rather save up all the really nice days for when Erin is released from the hospital anyway!
Thanks so much for your prayers for Erin's white cell count. Her white cell count this morning returned to .2, which technically is up, but the difference between .1 and .2 (or even .3) is considered positive but realively insignificant in the big picture. Once we see the .2 turn to .3 and then .4 and so on, there'll be cheering in Minneapolis!! You'll probably hear us in Bethel!!
Tomorrow will be Day +21, the average date of engraftment for umbilical cord stem cell recipients (which can take up to +35 days or more). They are going to perform a bone marrow aspiration to check and see how many cells in Erin's bone marrow are donor cells. This is one of the routine aspirations that is part of the protocol here at Fairview. We questioned why we would want to do this now, before her white cell count had rebounded. Her doctor said that her marrow is actually about two weeks farther along than what her current blood counts reflect. By performing this now, they can see what's going on in there which indicate what we can expect in the next few days. The doctors just rave about Erin's progress (no fevers, mouth/throat sores healing, appetite, etc)! While we're comforted by her progress and positive attitude, it's so difficult for Barb and I, as we await the lab results each morning on pins and needles ... only to discover there has been no real new development. We know that the Lord's timing is almost always different than ours, so we'll try to be content to wait on the Lord. We're praying that the aspiration provides information that positive changes are soon coming.
On a positive note, her doctors say that Erin's room is the "Boring Room" on the floor. This is a positive comment meaning that Erin is not requiring any special attention or that there are any major concerns. They've also decided that she is eating well enough and taking in enough calories to allow them to take her off the IV nutrients (TPN). Praise the Lord!! This is a considerable step forward since most kids leaving the hospital still require the TPN. If they find at some point that Erin's not taking in enough calories, they can always start her back on the TPN. By doing this, they also feel that it will help reduce her elevated bilirubin count. They said the the TPN puts additional strain on the liver and it can't filter everything out of the blood. As a result, the bilirubin is usually elevated. We'll see how she does.
Saving the best for last, today one of the male nurses in the unit that coordinates all the BMTs (Kerry) was able to remove the fitting that was connected to Erin's C-line which has been stuck for about six days!! He came in with a pair of needle-nosed pliers and ended up getting it loose!! I told him if I knew that we could use tools, I could have gotten some out of my truck and had it loose days ago!! What an incredible relief for us AND the nurses! I know that they were concerned. Praise the Lord that this has been fixed and one less thing that we have to worry about.
Tonight, please pray for Erin's aspiration tomorrow (11:00 CDT) and for rapid progress in her white cell count. Also remember the other kids in the unit: Luke continues to have serious issues, Terrell is making progress but has several complications, Sidney should be headed home to North Carolina soon, Jared is doing fine but continues to recover, Devon (a seven yr old FA patient) who will go to transplant tomorrow, and others. As I've said before, these kids are all amazing people with incredible will and strength.
Until tomorrow.....Our Love to all.
-Kevin, Barb, Jess, Katie and Erin
Monday, May 30, 2005 8:47 PM CDT
Day +19
Well, today was an "up" and "down" day for us. It started down -- not because Erin felt bad, but because her white blood cell count dropped back to .1. I have to be honest -- I cried when I saw the results. You cannot imagine how difficult it is to wake up every morning thinking, "is today going to be the day?", only to find that things have actually gone in the wrong direction!
I feel guilty for letting this get me so upset. We have been so blessed thus far, with few complications, and lots of improvements since transplant. But those all elusive white cells are driving me absolutely crazy! They are the key to this whole process. Erin's blood is drawn each morning at 4:00 am for testing. They get the results back at about 7:00 am, and for the last several days, I have literally been sick to my stomach awaiting those results each morning. Every day, my mind races as soon as I open my eyes. Half of me feels like a child on Christmas morning -- fully expecting to hear that her counts have jumped dramatically; and the other half of me is absolutely terrified that still, on day +19, there has been no improvement. Erin's bilirubin is back up again today. Perhaps it was the double blow this morning that made me cry (lower white count; increase in bilirubin). Regardless, her doctors are telling us to hang in there. All of her other test results are coming back fine -- no concerns in any area. When I think about what other families on this floor are going through right this minute, I feel foolish for being so upset. I guess I just can't help it. I'm the mom. That's my job.
Erin is eating extremely well. We ought to own stock in Campbell's soup for all the soup she's eaten in the last several days! She craves things with tomatoes or catsup, but she is still fearful that those things might upset her stomach or burn her mouth, so she's avoiding them for now. Her doctors are delighted with her appetite, and with her ability to eat at this point in the game. Each day, I can see her improving. She didn't even have her typical slow start this morning. No pain, no nausea. Just a great day all around. Except for the white blood cells.
One of the things I appreciate most about this web site is that I can request prayer, and you are able to respond quickly. Tonight, in addition to thanking God for such a smooth trip so far, I would ask a special prayer for improvement in Erin's white blood cell count, and that her bilirubin will go down quickly. We are so blessed to have such wonderful family and friends who are willing to lift Erin up in prayer day after day. I attribute all of our success thus far to those very prayers!
Please continue to keep Luke, Terrell, Sidney, Jared, Nate and Devon in your prayers. Some are struggling terribly tonight, and some are just beginning their transplant journey, but all would greatly appreciate your prayers.
I cannot thank you enough for making this journey with our family. We can sense your presence throughout the day, and it is a tremendous comfort to us. Please keep Katie in your prayers as we are separated from her for the first time since we came up here. I know she is enjoying her time at home, and really looking forward to her trip in a couple of weeks -- but I really miss her and am counting the days until she returns.
All our love. Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Sunday, May 29, 2005 8:00 PM CDT
Day +18
Thanks for checking in on us. Yes, I arrived safely back in Minneapolis very early this morning from Jessica's graduation celebration (I was up for about 21 hours in all) and it was worth every minute to be there for my oldest baby girl. It was a very special day!
I'm afraid, on the surface, tonight's update may be a little boring. But from our standpoint, EVERYDAY that the Lord has given us is a GREAT and EXCITING day!! ("This is the day that the Lord has made, I will rejoice and be glad in it!")
There hasn't been any further increases in Erin's white count but, that also means that they haven't decreased either. The doctors continue to be very optomistic and reassure us that, though Cord Blood transplants statistically take longer to engraft, we should start seeing increases any day now. When we look at the complications being battled but some of the other young people in this unit, we praise the Lord for the progress Erin continues to make. As Barb noted in yesterday's update, they had been working to reduce her pain medication (10% reduction every 12 hours) until they found she was having to deal with some pain again. They bumped it back one increment and it seems to have leveled out again. The thought in this unit is that pain contributes to stress and stress is not a health atmosphere for healing. Reduce the stress...increase the opportunity for healing. Her days have been following a pattern...slow start in the morning, good nap mid-morning, awaking around noon, and having a great afternoon/evening. She looks better, with more energy, everyday.
Erin's appetite is steadily coming back. While she doesn't eat much in the morning, she's been making up for it in the afternoon. Today for lunch, she had a bowl of chicken noodle soup with crackers and a soft drink. Then for dinner, she had a whole hot ham & cheese sandwich from Arby's and a softdrink. Barb had a class this morning in the event that she still needs the IV nutrients when we are released back to the RMH. The instructor commented that if she is eating as well as she is at this stage, she might not require the IV nutrients. We pray that this is the case.
As Barb mentioned in an earlier update, Katie and I had the opportunity to travel home for Jess' graduation. It was a great time of celebration but a very emotional one as well. For any of you that know Jess, you'll know what I'm talking about when I say that she has developed from this shy little girl into wonderful, confident young lady. I am so incredibly proud of her! I wanted to also thank Rickie and Greg for having a wonderful party at their house after the graduation ceremonies. You both worked so hard to make sure every detail was just right and it was. Barb and I wished we could have been there to help. Thank you both so much for everything!
I also would like to thank everyone who attended Jess' party that inquired about Erin. I wanted to concentrate on it being Jess' day, but Erin was of course weighing heavy in my thoughts. I am completely overwhelmed by the outpouring of concern for Erin's progress, as well as, the support and encouragement you gave me. As we have said time and time again, we are humbled daily by the sheer numbers of people that have reached out to our family in so many different ways. We read notes on the website from friends thanking us for being an inspiration to them. I must say that it is ALL of YOU that have been the inspiration. Your show of compassion and willingness to just be there for us, has inspired US to carry on when things seemed tough, at times even impossible. We KNOW that it has been the Lord's grace working through His people but, those people (all of you) first had to be willing to say, "Here Lord, use me." As I said before, my life has been forever changed and I now begin everyday in prayer by saying, "Here Lord, use me in a real way today. Let me make a difference in someone else's life today."
We'll never be able to "Thank You" for all you've done. Those words are not adequate to convey the emotions we feel. Please continue keep us in your prayers and leave us messages on the website as they are truly the fuel that keeps us going. Also please keep Luke Kaiser and all the other young people (Jared, Terrell, Nate, others) in the BMT unit in your prayers. May God pour out His blessings on them and on you for your prayers.
Until tomorrow....Our love to all.
-Kevin, Barb, Jess, Katie & Erin
Saturday, May 28, 2005 8:45 PM CDT
Day +17
Thank you for checking on us tonight! I'm updating the page a little earlier than usual because I'm just not sure how late I'm going to be able to stay up tonight! Kevin and Katie made it safely to Cincinnati early this morning. I've spoken to him a couple of times today, and it sounds like Jessica's graduation, and the party afterward, went very well. Kevin was getting ready to head back to the airport at about 8:00 pm.
In spite of the fact that Kevin hated to leave Erin for the day today, I know he really enjoyed getting to go home and see family and friends, if only for a very brief visit. He said our house looks like it's been abandoned from the outside -- but the dogs were delighted to see he and Katie. All in all, it was a good day. I suspect his whirlwind day today will catch up with him sometime tomorrow afternoon, but I know it was all well worth it to be able to be with Jessica today.
Erin had a pretty good day. Still no change in her white count, but we know it's coming. They have begun to wean her off her pain medication, and after several days of gradually decreasing her dosage, I think she hit the point today where it was too low for her current need. She was very nauseous this morning (something she has not experienced in several days). They tweaked the amount of pain medication she is receiving, and by early evening, she was feeling great. She ate better tonight than I have seen her eat since her transplant, and I have a feeling she's not going to be ready to go to sleep anytime soon (darn! I'm worn out tonight, and would love to go to bed early!).
They did not send anybody else up to work on Erin's C-line today. Her doctor said that it is really not a huge concern right now, and they will get somebody from the department that puts the C-lines in to come up and take a look at it on Monday. One of Erin's nurses mentioned today that several patients on Erin's floor are having problems with their C-lines. However, her doctor said not to worry about it, and so I'm not going to.
The weather in Minneapolis was gloomy and cool today. I've come to the conclusion that there are two types of days in Minneapolis -- miserable, or perfect -- and nothing in-between. When it's nice, it's REALLY nice, but otherwise, it's crummy. It's amazing how everybody perks up on the pretty days around here!
I suppose I'll wrap up my entry for tonight here. As always, we are greatly encouraged by your cards and messages. Thank you so much for your continued prayers on Erin's behalf. I wish you could see how wonderful she is doing! Thank you, thank you, thank you!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Friday, May 27, 2005 9:49 PM CDT
Day +16
Greetings, and thanks for checking in on us tonight. Erin had another good day (thank you, God!). She is getting a little bit bolder every day with regard to what she is eating (or rather, what she is attempting to eat). I made a mad dash to Taco Bell yesterday afternoon because she was craving tacos, and even though she was only able to take a bite or two, I consider the drive to the restaurant time well spent. At this point, I'd charter a jet to Cincinnati if she asked for Skyline chili! (Ha!)
Her white count is unchanged from yesterday, but still, her doctors are not concerned. I guess they are accustomed to this waiting game. I have to tell you, though, my stomach is in a knot every single morning as I await the results from her 4 am lab work. When her white blood cell count goes up, you won't have to guess that it has happened. You will be able to hear me cheering all the way in Cincinnati!! At this point, everything hinges on that number going up. Her doctors have already scheduled us to go to some training on Sunday morning to learn how to administer some of the medicines she will be required to take after we leave the hospital. I consider that a very good sign. If they didn't think our departure from the hospital was imminent, they surely would not have moved forward with this training (... and on a Sunday morning, no less!).
Her days have become pleasantly predictable. She sleeps quite a bit in the morning, but wakes up chipper and ready to play around noon. She is feeling good, and she's going stir-crazy in this hospital room. To some people, her restlessness would be a nuisance -- but I am thrilled by it. It's a strong indicator that she is getting better every day.
The nurses change the lines (tubes) that connect Erin's central line to all of her medications every three days. When they attempted to change out one of those lines today, they were not able to disconnect it from her c-line. Evidently, the last time the lines were replaced, the nurse that made the change (a trainee) screwed the new line in too tightly, and now, none of the nurses here are able to disconnect it. It doesn't sound like a big deal, but it is. These lines are replaced every three days to protect Erin from infection. Erin's C-line is the source of all of her medication, and until recently, all of her nutrition as well. Though we are still able to use the line, the valve that phyically connects Erin to the tubes cannot be replaced at this time. Kevin and I were incredibly frustrated when this problem came up this afternoon. There was some talk about "splicing" the line -- but it was quickly dismissed because it's simply not worth the potential risk of infection. (If you will recall, Erin's C-line goes directly into an artery in her heart. Great care is taken to assure that the line stays completely sterile at all times.)
We have come so far, and Erin is doing so well. To think that a mistake by a nurse in training could somehow put Erin's recovery in jeopardy is a tough pill to swallow. In addition to that, Kevin is flying out very early tomorrow morning, and leaving with this problem unresolved has resulted in a great deal of anxiety for him. Hopefully, tomorrow night's posting will contain a message telling of a quick and simple resolution to the problem on Saturday. God has been taking such good care of us, and I am confident he will take care of this problem as well.
Speaking of Kevin's trip out tomorrow -- most of you know that Jessica is graduating from High School on Saturday. We are so incredibly proud of all that she has accomplished during her high school years. This is a bitter-sweet time for us. We never dreamed that we would not be able to be together on this very important day in her life. It goes without saying that Erin and I will be with Jess in spirit as she receives her diploma tomorrow and begins the next phase of her already remarkable life. She has risen to every challenge thus far with grace and poise that is beyond her 18 years. She is a daughter and sister to be proud of -- and rest assured -- proud, we are! You go girl!! We love you very much!
As you can imagine, we have several prayer requests tonight. We pray for a simple resolution to the problem with Erin's C-line; we pray for traveling mercies for Kevin and Katie as they head to Cincinnati; and we pray that Jessica's day will be remarkable in every way tomorrow. Please also keep Katie in your prayers. While she is REALLY looking forward to getting home to family and friends, she was reluctant to leave the hospital tonight. She knows it will be several weeks before we will see her again, and it was weighing heavily on her this evening.
I also know there is one family, in particular, here in Minneapolis that would greatly appreciate your prayers tonight. There is a teenage boy (Luke Kaiser) in a room down the hall from Erin who is struggling to recover from a bone marrow transplant he had in March of this year. My heart aches for this family, as they have had many difficult days lately. They are steadfast in their belief that God will bring their son through this, and I believe with all my heart that he will. Please pray that God will touch Luke in a powerful way; that his condition will improve dramatically in the coming days, and that he will recover completely from his transplant. Please also pray that his parents and his brothers will have strength during this time, and peace that surpasses all understanding.
As always, I thank each of you for the prayers that you lift up for us each day. I see the dramatic results each time I look into Erin's eyes! Thank you from the bottom of my heart.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Thursday, May 26, 2005 8:14 PM CDT
Day 15
Thanks for checking in. I'm able to get an early jump on tonight's update because....well....we're bored! You know, the good kind of bored when everything is going well and your waiting on the Lord's next touch. We've experienced that touch so many times since we've arrived, we're excited to see how the Lord moves next! And we have been sooooo blessed!!
Erin had an fairly uneventful day. She slept most of the morning and early afternoon. Her white cell count continues to hover around .2 - .3 (200-300). The sores on the sides of her mouth and throat are all but healed leaving her tongue area as the last to heal. According to the doctor, this apparently is not uncommon. The doctors are still very upbeat on her status and progress. We're all just waiting for that raise in the white cell count (at least 2000-3000) and the return of the ANC (Absolute Neutrophil Count) to be at a minimum of 500. The ANC basically equates to her immune system capability. The doctor noted this morning that based on the progress of healing in her mouth, he wouldn't be surprized to see the white cell count to increase dramatically in the next few days. Keep those prayer coming!!
Beside the sores on her tongue, the only other thing she's dealing with is the skin on the ends of all her fingers is peeling, as if they were burnt and blistered. There's really no pain associated with this, just somewhat of a nuisance. The only fear is that if the skin should get ripped and infected, with her levels as low as they are, it could cause more serious problems.
Erin spirits have improved greatly over the past couple of days. She's been smiling, laughing (as illustrated by the new picture last night) and gabbing it up with all her nurses. We know that she is feeling better because last night she said she was home sick. Prior to that, it wasn't even a concern. Barb and I feel that part of the problem is that she has been confined to this room, at the end of IV lines, for a entire month now. She hasn't known anything else except for what she sees out her window or what comes on the TV. Even though we'll have approximately another two months here after she's released from the hospital, we're hoping that her spirits will continue to improve once she's able to move around a little while at the RMH.
We are so humbled by the number of prayers that on being offered up on our behalf. The cards, letters, words of encouragement, and the tapes of our weekly church services continue to give us strength on a daily basis. From what we have read, the Lord is not only moving in our lives but others as well. In addition, the gifts that have been sent to the girls break up the monotony and bring some light into these long days so many miles from home. "Thank you" does not come close to the love and appreciation we feel for all of you and the roles you play in our lives. Erin wanted to attach another picture tonight with a little message to all of you.
Until tomorrow. Keep lifting those prayers! Our love to all....
-Kevin, Barb, Jess, Katie and Erin
Wednesday, May 25, 2005 9:39 PM CDT
Day 14
Today is the two week anniversary of Erin's transplant -- and what a difference two weeks can make! Another great day for Erin. She has had a low-grade fever first thing in the morning for the last two days, but after a single dose of Tylenol, the fever has gone away for the rest of the day. Other than that, there is absolutely nothing to report.
Her white blood cell count continues to hover around the .2/.3 range, but her doctor told us this afternoon that she is obviously producing white blood cells because her throat and mouth sores have dramatically improved over the last couple of days. That healing could not take place without white blood cell production. Her system is using those new white cells rapidly to correct any damage that was done by the radiation and chemo. Once those things are under control, her counts will go up. We are not concerned. We see the improvement in Erin every single day. Her bilirubin (sp?) is back to near-normal levels, the C-diff she was diagnosed with is completely gone, her throat pain is gone and her mouth sores have improved dramatically. The doctors that treat Erin are light-hearted each time they visit Erin's hospital room. They tell us her lab results look great, and they are waiting for the same thing we are -- for her white cell count to go up, up and away! Since cord blood stem cells typically take a bit longer to engraft, Erin is still ahead of the game. I guess there is no way around this period of waiting. Every patient that has a transplant simply must go through it.
The Child Life Specialist here at the hospital (Jen) is absolutely incredible. She has visited Erin nearly every day since she was admitted to the hospital, and Erin has come to REALLY look forward to those visits. Jen is responsible for Erin's multi-colored hair salon experience, and also for the touching memorial service for Erin's hair when it all fell out. She is the one who helped Erin prepare my Mother's Day surprise, and she has shown up with dozens of fun activities and ideas for things to do to fill Erin's long days in the hospital. What I love most about Jen is that her time with Erin is never rushed or restricted in any way. For all Erin knows, she is the only child Jen spends time with here at the hospital. She will sit at the foot of Erin's bed and paint tiny clay pots, or create magnificent works of art from paint splattered on a piece of construction paper -- all the while forging a friendship with Erin that has permitted Erin to share her innermost fears and hopes. I realize that this is precisely what Jen is supposed to do -- but she's incredibly good at it, and she has been a balm to Erin's spirit.
We have also been blessed with some absolutely fantastic nurses here at Fairview. They find a way, day after day, to strike the perfect balance between compassion and competence, and Erin has become quite fond of several of them. This floor in particular is extremely demanding, and the nurses are always on top of whatever is going on. When you think about what they are exposed to with each child and each illness, their pleasant disposition and cheerful demeanor is remarkable.
Well, it's time for me to shut the computer off and rest for a short while. Erin is slumbering next to me as I type this. Another great day -- thank you God!
Thank you for your continued prayers and messages of encouragement. We miss you all very much!
Until tomorrow...
- Barb, Kevin, Jess, Katie & Stinker Bug
By the way -- you may want to check out Erin's newest photo added to the website. I want to make it very clear that I was not responsible in any way, shape, or form for this new picture. It was mostly Erin's idea, and Kevin was delighted to facilitate. I think it goes a long way in demonstrating that Erin is back to her old, nutty self. A special thanks goes out to Jessica and Rickie for providing the Billy Bob Teeth that Erin insisted on wearing. I think I should have warned Erin that pictures like this have a way of coming back to haunt you when you least expect it; but alas, you live and you learn! Enjoy!!
Tuesday, May 24, 2005 9:43 PM CDT
Day 13
Greetings from Minneapolis! We're almost at two weeks post transplant and Erin is doing GREAT!
She had a good night's sleep last night and another wonderful day today. The nurse coodinator in the BMT unit commented this morning that at the rate Erin is going, she wouldn't be surprized if Erin was able to be discharged to the RMH by the end of next week! This of course would all be hinged on her white cell count being at a safe level. The doctors came in during their morning rounds only to tell us they have nothing to tell us, she's doing remarkable and they're just waiting on the same thing we are.....her white cell count.
She continues to have an appetite and she's been testing several items to see what she can tolerate. She even gave Barb a shopping list of items she would like to have. If it weren't for the sores in her mouth, I think the kid would be eating with a vengeance (watch your fingers around her!).
There was one solemn moment today. Jen (the Child-Family Life Specialist) came in and she and Erin wrote a letter to her old hair to say good-bye, a eulogy of sorts. It was so cute! The letter included all her likes (like keeping her head warm in the winter) and dislikes or things she wouldn't miss (like Mom trying to brush out the tangles when it's wet). I think it really helped Erin to bring closure to the whole matter. As Barb mentioned in our update yesterday, if Erin is okay with it, we're okay. She continues to amaze us both!
As Barb also mentioned in the last update, we are just flooded with emotions when we stop and think of what has just transpired in the past two weeks. Emotions, some of which we have had to bottled up for almost two years, are now being poured out. The Bible speaks of it being a "privilege" to endure trials in life. Even though I believe the Bible from start to finish, I never fully understood HOW you could view trials as a privilege. Now I do. The Lord's grace IS sufficient. Truly amazing grace! This journey has made our marriage stronger, our family stronger, and our friendships stronger. The Lord has used people to answer so many of our prayers and bring encouragement to us just when we needed it most. It's helped peel away all those layers of "stuff" that consumes all your energy and blurs your vision, keeping us from being the person God really wants us to be. For almost two years, we've questioned if the diagnosis was correct, who is the right doctor, where is the right hospital, what is the right treatment. We read and researched everything we could get our hands on, etc, etc, etc. It wasn't until we turned it all over to the Lord, really turned it over and let it go, that all these questions and those we had not even thought about, were answered. I know that the reason Erin is doing so well today is because of the Lord and His infident grace! Praise God!! Because of this I will never be the same. For that matter, our marriage, our family, our friendships and how we look at other people will never be the same.
Until tomorrow.....We ask for your conitinued prayers. Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Monday, May 23, 2005 10:11 PM CDT
Day 12
Greetings! Another absolutely GREAT day for Erin! Her white blood cell count increased to .3; still very low, but the trend is undeniably UPWARD! We are ecstatic! Erin has improved dramatically over the last couple of days. She's awake, alert, active, playful and happy. The nurses are absolutely amazed at the difference in her. She is chatty when they come in, and her sense of humor is back with a vengence. I am in awe of her. The doctors can't explain it -- they are just telling us to keep doing whatever we are doing. So, with that in mind -- please keep doing whatever you are doing!!! (i.e., praying!) Her appetite has returned, unfortunately, she still has some sores in her mouth that are preventing her from eating anything substantial. She's been chugging chocolate milk like it's going out of style. She's experimenting with other types of food, but so far, buttered noodles and chicken noodle soup are the things she's had the most success with. I have to restrain myself to keep from cheering every time she takes a bite! God has been amazingly good to us, and I am humbled and thankful.
She has come to terms with her hair loss, and I am thankful for that as well. As I've told Kevin -- I can cope with anything, as long as Erin can cope. But when she comes up against something that breaks her spirit, it breaks my heart. The Child Life Specialist, Jen, came in today and cut what remained of Erin's hair (at Erin's request). She brought a little box with her, and as they cut the long strands off, she braided them and placed them in the box. Erin asked for a mirror when the whole process was finished, and I held my breath as she surveyed the final result. Jen assured her it was okay to cry, if that's what she felt like doing. But she didn't. She simply wanted to know what she looked like. Like everything else she's been though -- she has made her peace with it, and she's ready to move on.
Erin slept late this morning, and Kevin ran back to the house to rest for a little while. While he was gone and Erin slept, I just sat next to her bed rocking quietly, thanking God over and over again for everything he has done for us. My heart literally felt like it was going to burst from my chest, and I felt relief for the first time in nearly two years. As I sat here, I allowed myself to contemplate the future, and it was such an incredible, wonderful feeling. I allowed myself to think about soccer games and cheerleading practices, parent teacher conferences, Thanksgivings and Christmases to come, birthday parties, school dances and graduations. I found myself looking forward with great anticipation to camping trips with dear friends, and bible school, and cookouts, and trick-or-treating, and orthodontic appointments (ha!) -- all of the normal things that make up our everyday lives; things I simply could not contemplate since Erin's diagnosis. For the last two years, I have refused to allow myself to acknowledge the beauty of the fall leaves (my favorite time of year) because it was simply too painful. When your child is struggling with a life-threatening illness, beautiful things that once gave you great pleasure now cause heartache. For a time, this world was a very bitter place for me. Without the people you love -- the things that you enjoy simply do not matter anymore. I praise God for the hope he has restored in my soul. Life is so good!
And on that note, I will close for tonight. I hope everyone had a day as good as Erin's! We love you, and thank you for your continued prayers.
Until tomorrow...
- Barb, Kevin, Jess, Katie & Erin
Sunday, May 22, 2005 7:02 PM CDT
Day 11
Thanks for taking the time to check on Erin's progress. Today was a very pretty day here in Minneapolis (at least it looked that way from our window). Lots of warm sun and a light breeze to go with it. It was definitely a nice break from the clouds and rain that we had all last week.
Along with the great day outside, Erin had a wonderful day inside. She got off to a bit of a slow start with some nausea this morning but this soon went away. The rest of the day she was a different child. While she still has several large sores in her mouth and throat, the pain seems to have subsided somewhat. Maybe, in part, a result of the doctors tweeking her pain medication but we believe that it has been the Lord's touch that has given her the relief and produced those priceless "Erin" smiles and laughter. I feel like I've been to church, Praise the Lord! She was out of bed for a time to sit in a chair. She colored, played with dolls, read some of her book she received from friends in Canada (The Nose from Jupiter) and even posed for a picture with all her new friends she has received (newly posted on the website). This evening, she even had some appetite! It was only a few bites, but I still classify it as eating. What a difference! We all feel great!
Her bilirubin count is still slightly elevated but has moved considerably in the right direction. The pain in her chest has eased and we have decided that this was probably some strained muscles from vomiting. Her white cell count remains at .2 (not very high but it hasn't gone down...Praise the Lord).
Erin has started to make peace with her hair loss. She currently only has whispy strands remaining. Today, out of nowhere, she compared herself to the grandpa from the movie "Holes". For those of you that have seen this movie, you can find the humor in her statement. She and I laughed and laughed!! She thinks tomorrow she's going to talk to her Child-Family Life person (Jen) to see if she would trim her remaining hair. Erin said she trusted Jen to trim her hair since she was a "professional"!! This was another humorous moment,in itself, since Jen is a pediatric psychology major.
All in all, it was a refreshing day. We pray that we have turned the corner, if only a little, and are heading into better days of recovery. Its still a long road ahead of us but the Lord is taking care of those!!
Thanks to all for your notes and continued prayers. Please remember in prayer all the kids here in the BMT unit and those back at the RMH awaiting the day that they can go home.
Until tomorrow...Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Saturday, May 21, 2005 9:03 PM CDT
Day +10
Greetings, and thanks for checking in on us tonight. Day +10, and not much new to report. The whole family spent the day together at the hospital. Typically, Kevin and I pass each other in the hallway coming and going. That works particularly well when Erin does not sleep well at night, but she had another good night last night so Kevin didn't feel the need to go back to the Ronald McDonald House to rest this morning.
Overall, Erin's day today was a carbon copy of her day yesterday. Her throat and stomach have been her biggest complaint, and the doctors think the blisters in her throat are the culprit. They are just giving her the pain medication she needs to be comfortable. There is no easy solution or quick fix for this; you just have to wait it out.
We did get a little bit of good news today. Erin's white blood cell count increased from .1 to .2. It was a miniscule increase, and it probably doesn't mean a lot to her doctors -- but at this point, everything hinges on her white blood cell count going up, so even a tiny increase is cause for celebration as far as we are concerned. What it really means to us is that SOMETHING is beginning to happen there. The nurse told us that number can go up and down in the early days after transplant -- but once it kicks in, things will begin to improve rapidly. Who knows? Tomorrow may be .3 (at which point, you'll probably be able to hear us cheering all the way in Cincinnati!!) A steady increase is what we're praying for. Cord blood stem cells can take longer to engraft, which means it may take a couple more days for Erin's numbers to begin improving, but there is a smaller risk of GVHD in patients who have received cord blood stem cells. It's a double-edged sword -- slower engraftment, but a much lower risk of Graft Versus Host Disease. We're just taking it one day at a time, thankful that we've experienced no serious complications so far.
Erin did complain today of pain in her chest. As a precaution, her doctor arranged for her to get a chest x-ray, but he said he did not expect to find anything. Sure enough, when the x-ray results came back, everything looked fine. They suspect that Erin's pain is nothing more than muscle pain. After a drowsy, quiet day, she has perked up quite a bit this evening. I'm hoping for another night of restful sleep. If she gets another good night of sleep, she should be in good shape tomorrow.
Her spirits are still a bit low. She has not been out of her tiny hospital room in nearly three weeks. It's easy for us to forget, because we are back and forth between the hospital and the house numerous times each day. I think the walls are beginning to close in on her. When I know she's not feeling well, I'll ask her what I can do to make her feel better, and her response lately is to "take her home." It breaks my heart. We've decided to start planning little day trips we can make with Erin once she is released from the hospital and feeling much better. Naturally, that time is weeks away, but having some fun things planned may help keep her spirits up as she struggles through the next couple of weeks.
Another thing that is weighing heavily on her is the loss of her hair. It's almost as if she's too embarassed to even talk about it, but it has really broken her spirit. In a rare moment today, she wondered aloud if kids would make fun of her if they see her with no hair. How do you respond to something like that? I'm sure there are children out there who probably would say something unkind because they simply would not understand. I told her that once we leave the hospital, we will be returning to the Ronald McDonald House, and the majority of children there understand completely what Erin has been through, and would not dream of saying anything hurtful. By the time we leave the Ronald McDonald House, she should be well on her way to pigtails and ponytails again. Please say a prayer that Erin's spirit will be strengthened in the coming days. These are tough days for her. In spite of everything, she has shown a remarkable amount of maturity and patience and I'm really proud of her.
Her bilirubin count appears to have gone down (thanks, in no small part to your prayers, I'm certain!). Overall, she's in great shape. We are just praying for her white cell production to kick in. When that happens, there is NO way that Erin can remain down in the dumps, because Kevin and I will be jubilant, and that is something you simply cannot keep to yourself.
Erin isn't the only one who misses home! We simply can't wait to get back to all of our friends and family. As always, your prayers are appreciated more than we can say.
Until tomorrow...
- Barb, Kevin, Katie & Erin
Friday, May 20, 2005 8:26 PM CDT
Day +9
Thanks for checking in on us today. Another week down and one more closer to coming home!
The medication for the C-Diff is apparently doing it's job. Erin was able to sleep the majority of the night (except for those frequent visits from the nurses). Since she had had several sleepless nights, along with the severe diarrhea, she decided today that she was still behind on her sleep. So that's exactly what she did the majority of the day....sleep and sleep and sleep. As it's my turn to stay with her tonight, I'm hoping that she gets a good night's sleep as well (and maybe a little sleep for Dad too).
When she was awake today, she became very blue over her hair lose. At one point, she starting crying and told Barb, "I hardly have any left.". It breaks your heart to see this and not be able to do anything to make it better. This is proving to be one of the hardest things for us. Maybe, in part, because it's not a physical issue (we can't just get some medicine for it). This child has endured so much thus far on this journey. A year and a half since diagnosis of clinic visits and periodic transfusions, traveling to Minneapolis for the procedure, an intense week of work-up testing, an hour and a half of radiation, five days of chemo, a bone marrow transplant, elevated blood pressure, mouth and throat sores, fevers, C-Diff bacteria, and bag after bag of IV fluids/medications she has taken head-on and never complained. Now she's loosing her hair and there's nothing that she, nor Barb and I for that matter, can do about it. We know that with time, she will make peace with this too and move on using her amazing inner strength that we have witnessed so many times. I couldn't be more proud of her courage and will power. I am honored and proud to be her father, as I am with all my girls. Jessica, Katie and Erin are special treasures to me, straight from the hand of God. I'm so proud of each one of them and the confident young ladies they are becoming. I am Blessed!
Erin continues to have an elevate bilirubin count but her weight returned to normal today, signaling that her body was processing the fluids. This was a good sign for the doctors but they'll continue to watch it. She also continues to have a lot of adominal pain/cramping. Again, we're told that this is part of the "normal" process and this will subside once that all elusive "white cell count" returns. This would signal the start of bone marrow engraftment, which is our next milestone in this journey. Hopefully we should start seeing this in the next several days. Once her white cell count starts, many of the after-effects of chemo will begin to heal. We can't wait!
Please also remember Jessica this week as she has completed another phase of her life. Today was her final day of high school and will be going through her graduation ceremony next weekend. Jessica will be attending Wilmington College in the fall where she just made the cheerleading squad. Katie and I will be flying home for graduation and then I will be returning to Minneapolis late that same day. Katie will be staying with Grandma/Grandpa McKee for a couple of weeks and then has been invited to go on vacation with some very good friends. (Another example of why we praise God for our friends!)
Your continued prayers and words of encouragement for Erin and our family are greatly appreciated and needed. Again, they mean more than you will ever know. Also keep these other "amazing" kids in your prayers that going through BMT's (Jared, Sidney, Terrell, Luke and others).
Until tomorrow.....Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Thursday, May 19, 2005 7:41 PM CDT
Day +8
Thanks for checking on us! It's my turn to update Erin's web page tonight. I feel awful because I didn't get it done the night before last. Erin had a rough night on Tuesday and I simply could not get to the computer to do it. Sorry, sorry, sorry! Kevin has forewarned me -- one more slip up, and I'm off computer detail for good! (Just kidding! He'd never do that to me!)
Overall, today was good. Kevin said Erin was up quite a bit last night. It's been days and days since she had a reasonably good nights sleep and I know it's catching up with her. The reports from her doctors continue to be good (Thank You, God!). Her doctor even went so far today as to tell us that she is excited every time she comes into Erin's hospital room because she's doing so well! She said to come into a child's room on day +4, 5, or 6 and find the child sitting up in bed, chatting and coloring is remarkable. The doctor told us that Erin's success during radiation and chemo was incredible, and that we cleared an enormous hurdle at that time without even realizing it! Most FA patients do not tolerate the chemo and radiation well, and those treatments end up causing BIG problems with organs such as the kidneys, liver and lungs. Erin experienced none of those things, so her doctors are thrilled. In spite of the nausea, her blood pressure, and other minor things, her doctor said it's all been "smooth sailing" from their perspective (easy for them to say!). Regardless, we are delighted every time we get a good report from her doctors. Nothing we are experiencing is outside the parameters of what is expected or normal.
We did find out today that her bilirubin (sp?) has been creeping up over the last couple of days, but they attribute that to the large quantity of medication that her liver and kidneys are trying to process. Combine the meds with no food whatsoever, and you end up with a bit of a problem. Please pray that Erin's bilirubin count stabilizes or goes down over the next couple of days. Again, they tell us this is common, but it's a worry nonetheless.
Erin is losing her hair in big clumps now, and I find myself on the verge of tears at times because of it. How ridiculous is that? She's breezing through all the other potentially serious side-effects of the transplant, and I'm crying over lost hair! I think what hurts the most is that I can tell it's something she's thinking about and worrying about a lot, though she won't admit it. (A mother just knows.) Shortly after Erin was admitted, Jen (the Child Life Specialist at the hospital) helped her make a little box to sit on her nightstand, to tuck away all of her "special thoughts" that come up during our time here. She told Erin that when she is frustrated, or afraid, or angry, or sad, she could simply open the little box, put her thought inside, and close the lid. Then, the thought magically goes where used thoughts go, and Erin can release that worry, or that hurt, or fear forever. Over the last couple of days, Erin has been very carefully adding little strands of her hair to that box as she finds them coming out. With every strand we add to the box, I shed a tear. It's both precious and heartbreaking. I suspect by this time tomorrow, her hair will be gone, for the time being, anyway.
As you can imagine, Erin has been a little blue over the last several days. I try very hard to keep things light, silly and fun around here -- but some days, in spite of my best efforts, she is just down. Your cards, notes and messages are a tremendous encouragement to her right now! Kevin and I cannot thank you enough for your support and your prayers. I know we've said it a million times so far -- but those are the things that are helping us get through this. I know without a doubt that your prayers have resulted in a tremendously positive outcome for Erin. How can we begin to thank each of you for your role in saving her life? I do not know where to begin -- but please know that we are forever grateful to each of you. I feel God's presence in Erin's hospital room, and I feel his presence at the Ronald McDonald House, and I know he's here each time we get a good report from the doctor. I even know he's here when we're up at 3 am when Erin's not feeling good. Never before in my life have I experienced God's presence in such a real, tangible way. The circumstances are not what I would have chosen, but I would not trade the opportunity to be this close to God for anything in the world.
Although we are separated by many miles, we feel you close in our hearts. Thank you for your continued prayers. Please also remember all the other precious children we have come to know and love here who are struggling to overcome serious illnesses (Jared, Sidney, Terrell, Tom, Eric and numerous others).
We love you guys! Until tomorrow...
- Barb, Kevin, Katie & Erin
Wednesday, May 18, 2005 10:26 PM CDT
Day 7 (one week anniversary of the BMT!)
Thanks for checking in on us today. We apologize for the late posting of yesterday's update. We understand that we created quite a stir. We are humbled to think that we have so many people that not only lift our family daily in prayer but have a genuine concern for us and our journey. It's difficult to comprehend everything that's taken place in the past week of Erin's life. The journey of her new lease on life started one week ago today with transplant of the donated cord blood cells. It's difficult to put into words what this family, an unknown donor, means to us.
In spite of her rough night last night, Erin had a relatively good day. Her temperature remained normal all day (praise the Lord!). She started back on the blood pressure medicine and everything seems to be returning to normal there as well (praise the Lord again!!). We've switched pain medications and so far she seems to be tolerating it much better. The hives and itching have all but disappeared (you know it...praise the Lord!). This morning, the doctors told us that they feel Erin is doing great. They said most FA patients have additional organ problems as a result of chemo but Erin has done extremely well! They know we may become discouraged due to the "bumps" in the road, but reassured us that Erin is exactly where she needs to be on the road of recovery (do I hear "Praise the Lord" one more time!).
We continue to treat the C-Diff. After several creative ideas to take the pills, Erin has decided that just dissolving it in a little water for her to sip seems to work the best. She says no matter what we've tried, the pills taste NASTY! This is amazing since the chemo has all but distroyed the child's taste buds, she can still taste these pills! They must REALLY taste bad (and they say the liquid form of the medication tastes worst!!). She decided she'd stick with the pills and deal with the pain and discomfort in swallowing.
The newest development today was her hair lose. She would run her fingers through her hair and come out with a handful. This bothered her a little bit this morning. She and I discussed it for quite a while. A friend, that had gone through chemo, had told us that this was an outward display that the chemotherapy had worked and had accomplished what it was suppose to do. She understands that it is only temporary but, it doesn't make it any easier for a little one, especially a girl. She has seen many of the kids at the RMH with no hair and they're happy and functioning just fine. Another little girl, Sidney, who is a fellow FA patient we met here, is about to go home and her hair is already coming back. This encourages Erin that she too can make it through. This afternoon she even joked that she would have a hair style as her "uncle" Scott (I'll leave off the last name but he'll know who she's talking about!). She's resolved herself to saving some of her hair for her scrapbook so she can compare it to her "new" hair when it comes in. What a kid!! I just can't seem to love her enough!
Tonight we pray that the Lord's peace rain down on Erin for a restful sleep. His blessings continue to pour out on entire family through the daily victories we have, the new friends we have made through our common bonds, and through the prayers and words of encouragement from all of you, our family of friends. I've said it before and it remains to be our claim, "What an awesome God we serve!!" Until tomorrow......Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Wednesday, May 18, 2005 9:50 AM CDT
Update for Day 6
Good morning all. Thanks for checking in on us, sorry for the delay in getting you an update. Thanks for those who called worried that something was wrong since we didn't update the website last night. Last night was a little rough for Erin so Barb didn't have an opportunity to post an update.
Erin's temperature continued through Monday night, the highest reading reached 104.2. Yesterday, her temperature continued through much of the morning when they discovered she had increased levels of C-Diff (Clostridium Difficile) in her stool. C-Diff is one of the common "bad" bacteria that resides in our gut, along with many other types of "good" bacteria. Most of the time, the "good" bacteria, along with our immune system, keeps the "bad" bacteria in check and under control. Many times, the combination of chemotherapy and antibiotics kills off the "good" bacteria, leaving the "good-vs-bad" out of balance. This situation, coupled with basically no immune system, allows the C-Diff bacteria to grow. This causes belly pain, fever, vomiting, and severe diarrhea. This is what kept her up and down all night, and did not allow for much sleep at all for Erin or Mom.
C-Diff is easily treated through medication for about 7-10 days (usally takes a few days to take affect) and we're told is very common. Since the best form of the medication to get it directly to her gut is a pill, this poses some other discomfort with the sores in her throat. We're trying some different ways to "modify" the pill to make it a little easier to get it down (broken into little pieces, crushed, crushed/mixed in some jelly). We're told the liquid form of the medication tastes horrible so we're trying other options first. It can be given through her IV but takes longer to take affect.
C-Diff is also transmittable, so all the nurses/aides now wear gowns/gloves entering her room. I think this upset Erin more than anything since the last time they wore gowns was when she was going through chemo and it made her feel dirty. We assured her that everything was fine and the nurses were only wearing the gowns/gloves to keep this from spreading to other patients. As with everything else so far, she soon accepted this and is ready to move forward.
Her fever is now gone and her blood pressure has come back up. They may choose to put her back on some blood pressure medication to keep it from going too high. We'll see what the doctor says this morning.
On a positive note, her counts showed a white cell count this morning, indicating that her system is starting to rebound! Praise God!!! Even though it is still VERY low (.1) and it will continue to vary day-to-day, it is movement in the right direction. After the past few days, I think the Lord just knew that we needed a little good news to renew our strength for the rest of our journey. It's worked.
We're not sure what other "bumps" in the road we'll have to encounter but, once again, we've turned everything over to the Lord and we trust in Him completely to bring us through.
Katie feels much better (thanks for checking). We think it may just be some allergies as things are in bloom up here. That's about all for now. We'll keep you posted on today's progress. Thanks again for keeping Erin and our family in your thoughts and prayers. Please don't stop.
Until later.....Our love to all.
-Kevin, Barb, Jess, Katie and Erin
Monday, May 16, 2005 7:19 PM CDT
Day 5
Thanks for checking in on us. I'm getting a little early start on the journal entry for tonight. Barb left the hospital to be with Katie at the RMH. Katie had the sniffles when she got out of school so we thought it was best that she didn't come to the hospital and Erin is currently asleep. So all is quiet...for the time being.
Today was a continuation of yesterday. We found ourselves battling fever, nausea, pain from the sores in her mouth and throat, and her blood pressure. At this moment, she is hooked up to no less than six different IV medications. Thankfully, her doctors and nurses take everything under review, which helps to put our minds at ease (but you never really quit worrying).
Today her fever ranged from normal to 104.2, hovering around 102 most of the day (right now it stands at 101.3). To date, all blood cultures have come back negative (a good thing) and she continues be get a couple of different IV antibiotics that cover a broad range of potential causes. We're told that fevers are a very normal part of the post-BMT healing. The problem is right now her immune system is basically non-existent. If the high fever should persist for a couple more days the doctor will order another CT scan to rule out any infection.
She seems to have learned to managed her mouth/throat pain through her IV self-medication. The nurses say it very important to use the pain medication as needed. This keeps the stress level down, aiding in the healing process.
A solution to her blood pressure has proven a little more elusive. A side effect of one of the steriod-based medications she's on is an elevated blood pressure. Hence they started her on blood pressure medicine to correct it. This morning, her blood pressure was extremely low, which could be attributed, in part, to the high fever. They took her off the blood pressure medication and started pushing fluids. They later they gave her a unit of Fresh Frozen Plasma (FFP) to increase her total volume, which seems to have done the trick. Her last reading was back in the normal range. Since every patient reacts to the medication differently, it becomes a little trial and error to zero in and get it just right.
The one bright spot was that she didn't get sick today, though there were several times when we thought it was inevitable. We've learned to order the medication at the first hint of nausea before she becomes sick. This seems to be working.
We've also seen several loose hairs in her bedding today and we know that another ugly side-effect of the chemo is coming (we've been told it usually takes place around Day 7-9). We hate the thought of it but we're sure that, after the inital shock, she will take this too all in stride. What an amazing little girl!
Her strength and resolve continues to amaze us and she remains to be our little trooper. She does exactly what is asked of her, without complaint. Through it all, God continues to be very real to us. His guiding hand is felt in everything that is done. We pray several times a day for His comfort and leading, and each time we feel His presence and peace with us. We want to thank all of our prayer warriors for your dedication and continued words of encouragement. It is working miracles in our journey, please don't stop.
Until tomorrow......Our love to all.
-Kevin, Barb, Jess, Katie and Erin
PS....Hope you've had a chance to check-out the new pictures of Erin's "Doo".
Sunday, May 15, 2005 8:22 PM CDT
Day +4
Greetings, and thanks for checking on us tonight.
This has been our most difficult day, post-transplant. Erin has run a fever ranging from low-grade to 103.4 degrees all day long. We've been battling it since the crack of dawn, and we're all exhausted. Tylenol helps a little, but not nearly enough. Erin is also experiencing severe mouth and throat pain. Cool water is painful to swallow, and eating anything of substance is completely out of the question. The only reason that Kevin and I have not lost our minds at this point is that the doctors told us to expect all of this. The doctors have prescribed a very strong pain medication for Erin and they have given her the ability to administer it herself when the pain becomes unbearable. There is a line attached to her IV pole that is connected directly to the pain medication. She is getting a small amount of the medicine all the time, but when the pain gets too bad, Erin can push a button and the machine will administer a "surge" of medicine to give her some quick relief. Naturally, the machine will only allow her to get so much medicine within a given period of time. So far, she has only pressed the button two times. Considering that she has the ability to do this every ten minutes, I think she has exercised a good deal of self-control. Our pediatrician in Cincinnati once told me that Erin has a very high tolerance for pain, and after the last couple of days, I am convinced he is absolutely right.
Just a few moments ago, I was sitting on the edge of Erin's bed praying for a break in her fever. As I was praying, I could feel Erin begin to tremble under her covers. The nurse came into our room a moment later, and commented that Erin's fever must be coming down, because chills were an indication of precisely that. It's amazing. Simply amazing. After the nurse made that comment, I felt relief wash over me like a cool spring rain. How do families get through this without God? I cannot imagine.
Jessica's visit over the weekend was a breath of fresh air. We spoke to her a bit earlier this evening, and she and her mom were already in Indiana. They are probably home, or pretty close to home, by now. Erin absolutely adores Jessica. Kevin said she cried for half an hour after Jessica left the hospital last night. It was an emotional time for all of us. Now, Erin is counting the days until Jess is able to come back again. We all are.
According to our doctors, we are heading into the most difficult week of the entire process (Days 4 to 11). This is the time when Erin will be the most uncomfortable. As I've said many times, she complains very little, yet we know she is suffering greatly. Please continue to lift this brave little girl up in prayer! We know what we are experiencing is all part of the cure -- but as a parent, it is absolutely devastating.
I thank God daily for each of your prayers on Erin's behalf. My wish is that he is blessing you the way he is blessing us! As always, we thank you from the bottom of our hearts!
We love you! Until tomorrow..
- Barb, Kevin, Katie & Erin
Saturday, May 14, 2005 9:44 PM CDT
Day 3
Well another day down and counting. Thanks so much for taking some time to check in on us.
Erin had a great night last night. She was able to sleep all night (except for her vitals being taken evey four hours) without becoming sick. But shortly after getting up this morning, she became sick and required some medication. I think she was a little disappointed about being sick but we keep reminding her how well she is doing and that we need to keep taking it one day at a time. After a good nap, she bounced right back and had a great afternoon.
The after-effects of the chemo continue to make themselves known. She continues to develop sores in her throat and it finally required some pain medication. Since she continues to have some appetite (which is somewhat uncommon according to what they consider the "norm"), it's so sad to see her with tears in her eyes when she can't swallow. Once the medication took effect, she found that she could eat Sugar-Frosted Flakes once they became a little soggy in the milk. That was the best frosted flakes ever!! The doctors continue to be pleased with her status.
Katie, Jessica and her mom, Rickie, made a trip to the Mall of America for a girls day out. Sounds like they had a great time together. It was so nice for Katie to have some "down time" and something to do this weekend. Since she doesn't have school to take up the majority of her day on the weekends, it becomes very boring for her. This was a nice break for her and I know she really enjoyed it.
This evening was also a little bitter/sweet. As you know, Jessica and Rickie, had arrived safely on Thursday and it thrilled Erin to have "Big Sissy" here. Tonight they had to say their good-byes as Jessica and Rickie will be heading out very early in the morning (please keep them in your prayers as they travel). As you can imagine, there were a few tears shed by all. We decided sometime after graduation, Jessica will be returning with Grandma and Grandpa McKee's next trip north, and may decide spend some time with us here. This gave Erin something to look forward to and helped her feel a little better. Barb and I would also like to take a moment to thank Rickie for taking time off work to bring Jessica up to visit. No matter what anyone says, an eleven hour drive is not easy. It meant so much to us to have Jessica here and our whole family together. Thank You and may God bless you, Greg and Ryan (Ryan is Jessica's brother who sent Erin a whole stack of pictures from his pre-school class).
We continue to be humbled and inspired by the support we have received from everyone. All the cards, letters and pictures from back home keep us focused on returning home as soon as possible. For this we will be forever grateful. We continue to take it one day at a time, relying on the Lord for guidance. We ask for your continued prayers that the after-effects of the chemo be few and less severe, and for a full and speedy engraftment of the transplanted cells.
Until tomorrow. All our Love.....
-Kevin, Barb, Jessica, Katie and Erin
Friday, May 13, 2005 6:58 PM CDT
Day 2
Thanks for checking on us tonight! I have decided to update our page a little early this evening because we've had a great day, and we'll probably try to turn in a little early tonight if we can pull it off.
Day 2 - and all is well. We continue to be amazed by how incredibly well Erin is doing! My big fear at this point is that we'll let our guard down and become a little lax on things because Erin seems so "normal". She is beginning to complain of a sore throat, but it has not impacted her appetite too much. She snacks whenever she is hungry, and while she is not eating nearly the amount she would eat under normal circumstances, the doctors convinced us she would neither want to eat, nor be able to eat, by this time.
Erin has developed a routine of sorts. She gets nauseous very late in the evening, and it seems to stay with her until early the next morning. The medicine they give her for nausea makes her very sleepy, so she typically sleeps most of the morning; but once she wakes up -- you'd better watch out! She's ready to be entertained. And the "entertainment bar" gets raised a little higher every day! (How do I top a visit from the Minnesota Vikings yesterday? A lively game of "Go Fish" just doesn't hold the appeal it did a couple of days ago!) Speaking of visits, Katie's class at the Ronald McDonald House enjoyed a visit from several players from the Minnesota Timberwolves basketball team yesterday. How cool is that? They both had a wonderful day yesterday!
Erin's smashing new hairdoo is a hit! We've had hospital staff coming in and out of her room all day just to see the new "doo". She's like a local celebrity now! They divided her hair into three parts, and she selected the colors Green, Orange and Blue to use. The orange ended up being the color they applied to the center section of her hair, and since she parts her hair in the middle, the orange is what you see the most of. As a result -- I've finally got that auburn haired baby that I always dreamed of! It's really quite cute, and I love her new look. Make no mistake, however. There will be absolutely NO blue or green hair once we return to Bethel!
We have enjoyed having Jessica and Rickie (her mom) with us these last couple of days. We got to spend some time together early today, and it was great. Jess brought her pictures from Prom (last Saturday), and getting to see the pictures was a real treat. Actually, it was a bit bittersweet. Missing the important milestones in Jessica's senior year of school has been extremely hard on us. This is such an incredibly important time in her life, and it's heartbreaking that we can't be there to share them with her. She looked absolutely stunning in her prom dress, and I simply cannot believe she is going to be graduating in a couple of weeks. Where have the years gone? We are incredibly proud of the young woman she has become.
That's about all the news for today. Another good day; another day of answered prayers. We are very thankful.
Please continue to remember Erin in your prayers, and the other children on the BMT floor here at the hospital. They are all brave little souls!
Thanks for all of your messages of encouragement. We are touched by every single one!
We love you all! Until tomorrow...
- Barb, Kevin, Jessica, Katie & Erin
Thursday, May 12, 2005 9:39 PM CDT
Day 1
Barb and I are so glad you've taken the time to check in on us. We continue to be encouraged by your notes of support and amazed at the number of people that check in on us everyday. We're estimating that we get approximately 200 "hits" a day on Erin's website. We are all of one family and we are humbled by your faithfulness. The Lord continues to rain down blessings on Erin and our family. For everything she has been through in the past couple of weeks, Erin's first full day of post-transplant life went fantastic!
She started off a little sick this morning and was given some medication, which also made her very sleepy for the rest of the morning. The doctors have said that this can be attributed to the chemo and could last for the next couple of weeks. Chemo attacks fast-reproducing cells, like those in the bone marrow, the mouth/throat/stomach (which they classify as the gut) and hair to name a few. Other effects that we may begin to see soon are mouth/throat sores and hair loss. The sores can become severe enough to require pain medication. One BMT patient in our unit named Terrell, who's mother we met at the RMH, has had severe mouth/throat sores to the point he required oxygen. We understand he's doing better now but please remember him in your prayers. We pray that Erin will be spared of this level of sores.
Day 1 was also filled with many surprizes. This afternoon, four members of the Minnesota Vikings stopped by Erin's room to see how she was doing. She just layed there and smiled a lot but managed to answered their questions in a quiet little voice. One of them tried to make off with her new stuffed monkey (Georgie) but Erin put a quick stop to that. I don't think he'll make that mistake again! (I hope his arm heals before the season starts!?) What a great bunch of guys.
A little later, Jessica and her mom safely arrived in Minneapolis. I'm not sure who was more thrilled to see who. Erin to see Jessica/Jessica to see Erin? Me to see Jessica/Jessica to see me? Me to see Erin excited to see Jessica.....Well you get the picture, we were just plain happy! As far as Erin was concerned, things seemed a little better just to have Big Sissy here. Once Katie got out of school and she/Barb arrived at the hospital, it was just nice to have everyone back together.
Mid-afternoon things really got out of hand. As I mentioned before, hair loss is another effect of chemo. As a result, the Child-Family Life rep in the BMT unit (Jen), mentioned to Erin that many of the kids have a "make-over" day prior to loosing their hair. Some get crazy hair cuts or coloring. Erin quickly decided she wanted BLUE highlights in her hair (Sorry Miss Naegel, but we knew this wouldn't be allowed at school!). Erin had a 3:30 appointment for her highlights but, when Jen arrived, Erin had decided she wanted some REAL color. She decided to dye sections of her entire head GREEN, ORANGE, & BLUE!! Since her hair is so dark, the orange actually turned out a pretty shade of auburn-red. Of course Barb couldn't be prouder to finally have a daughter with red hair (sorry Mom it's only temporary!). Erin had a great time with it (and even stained the floor of her shower). We'll have to share pictures at a later date.
Erin was also able to eat a little today. Even through she will continue to receive IV nutrients and it's not necessary for her to eat, it's nice to see her interested in food. We understand that this will make for an easier recovery later.
As I close this journal entry, she is laying here sound asleep. We have a set of Christmas lights in her room that serve as her night light. It is so peaceful. I have to praise the Lord for His leading and the opportunity for new life. First for the new life through His son Jesus Christ and second for Erin's new life through this cord blood donor. Barb and I pray a prayer of thanksgiving and blessing on this unknown family who, through their donation of an umbilical cord that would have otherwise been discarded by a hospital, has given our baby a new chance at life.
"This is the day the Lord has made. I will rejoice and be glad in it!" Please also remember 4-year old Jarad as he goes into BMT tomorrow. Until tomorrow.....Our love to all.
-Kevin, Barb, Katie, Erin and now Jessica
Wednesday, May 11, 2005 9:53 PM CDT
Day 0 - At Last!!
Thank you for checking in on us tonight! I think I speak for both Kevin and myself when I say that we have looked forward to this day with great hope and excitement, but also with a great deal of fear and anxiety. It is the day we have worked so hard to get to -- yet also the day we tried to put off for as long as we possibly could.
After a fantastic afternoon and evening on Tuesday, the night turned out to be a rough one. Erin got sick several times during the night. Her 4:00 am platelet count dropped to 6,000 (dangerously low), and the doctors gave her a transfusion before I arrived at the hospital at 7:00 am. Typically, a transfusion will bring her platelet count back into the safe range and keep it there for a couple of days, at least. But that was not to be the case today. Shortly after Kevin left to return to the Ronald McDonald House, Erin got sick again, and this time, she vomited a lot of blood. I was shocked. I could tell by her nurses reaction that this was a reasonably serious situation, and I was on the verge of panic. Her nurse went out into the hallway to confer with a specialist, and I sat on the edge of Erin's bed, absolutely terrified. The specialist came in and explained that Erin's platelet count was so low earlier in the morning, that her body basically absorbed the transfused platelets immediately, without giving her count much of a boost. She apparently has some sores in her throat (a side affect to the chemo), and those were bleeding into her stomach which made her very sick. They arranged for her to get another platelet transfusion immediately, gave her some medication for nausea and to prevent any kind of allergic reaction to the new platelets, and that pretty much put her to sleep until mid-morning. When Erin awoke later in the morning, she was her old, chipper self. (I think it took ME longer to recover than her!)
As Kevin mentioned yesterday, we were blessed (beyond words!) to have our pastor and his wife with us for Erin's transplant. In addition to the spiritual comfort that their presence provided -- just seeing their familiar faces was a much needed treat! Erin's transplant went beautifully. There really isn't much to the actual transplant itself. They bring in an IV bag of the cells, hook it up to her C-line, and 15 minutes later, it's done!
Pastor Paul conducted a blessing service prior to Erin's transplant. I think it was at that point that the true significance of what we were about to do finally sank in, and it was an overwhelming experience for me. The joy, the relief, the awe in what God was about to do for Erin -- it was amazing and I will never forget it. The rest of the day was wonderful. Erin felt great, and looked great. I know that the doctors will tell you that it takes several weeks to see any results from a transplant, but I can tell you that she looked healed to me this afternoon! Her nurse mentioned casually tonight that Erin was her lowest maintenance patient on the floor. A coincidence? I think not! We serve an awesome God!
We realize that the road ahead is going to be filled with bumps, twists and turns -- but we are off to an incredible start. Modern medicine is an amazing thing and I thank God for it every single day -- but your prayers made the difference for Erin today, and I cannot thank you enough!
Your messages of encouragement were absolutely awesome. We know without a doubt that we are not going through this alone. You have encouraged us every step of the way. Please continue to keep Erin in your prayers. We received a fantastic e-mail today that said, "... there can be no testimonies without a test." How true that is! Our test continues -- but our testimony becomes stronger with each day that passes!
Jessica will be arriving early tomorrow. We can't wait to see her! Please keep her in your prayers as well.
I look forward to giving you another great report tomorrow night. We love and appreciate each of you!
- Barb, Kevin, Katie & Erin
Tuesday, May 10, 2005 8:26 PM CDT
Day -1
Barb is making a poster for tomorrow's celebration, so I have journal detail tonight.
As we sign-on tonight, we find ourselves on the eve of what we came here for. All the preparation, all the tests, all the chemo and the host of other drugs have lead us to this procedure tomorrow. Here at Fairview, they call it "Day 0" because all future treatment protocol is based on the day of the actual transplant. From here, some milestone dates we'll be looking for are: engraftment (the new marrow growing and producing new blood cells) around Day 14-20, bone marrow aspiration to examine the percentage of new marrow somewhere around Day 21-28 (based on the result of the aspiration, we could be released from hospital to the RMH) and somewhere around Day 100 to finally come home.
Today was a good day for Erin in several respects. Barb spent the night with her last night and it sounds like she had a fairly restful night, even with the need to still get up every two hours. This morning when I arrived, I found Erin with her head hanging over the "bucket" in a pre-vomit position (we've all experienced that). When entering any room in this unit from outside, you must first stop and wash your hands. As I was washing up, Erin's Nursing Aid entered the room ahead of me to which Erin picked up the bucket and placed it on Barb's head! I had been fooled! She was fine but, it was priceless to see the look on Erin's and Barb's faces when they figured out that they had exposed their little surprise on the wrong person. The Aid didn't know what to think. We all had a great laugh over it! It was good to laugh as a family after the past couple of days when she didn't feel much like smiling let alone laugh. I know God made us with a sense of humor and the need to laugh because it felt so good. Anyone that knows Erin knows that her smile can light up a room and ours was glowing! A little later, Erin fell asleep and slept most of the morning. I think she just needed to get caught up. When she woke, she got up and took a shower. She felt great the rest of the day. She even nibbled on some food (she hasn't really felt like eating the past couple of days).
This evening, we had another wonderful surprise. Pastor Paul and his wife Stacey arrived here from Bethel!! Erin was thrilled to see them. They had come all the way to Minneapolis to be with us tomorrow and perform a Blessing service for Erin's transplant. I don't have to tell you how touched we are to know that our church family made it possible for Pastor Paul and Stacey to be here with us on this very important day in Erin's life and the life of our family. Once again, it's the Lord, working through His people, to make things possible!! How can this transplant be anything other than a blessing knowing, once again, that the Lord is in TOTAL control!
The actual transplant procedure is scheduled for 1:30 pm central time tomorrow. We've talked to the doctors who have assured us that everything is "right where it should be for a successful transplant". They are amazed by how well Erin has done thus far, with so few side effects, and how positive our whole family has been. They feel that this will definately have a positive effect on the recovery period.
We're looking at this procedure as a celebration. A second or re-birthday for Erin! We even purchased an icecream cake from the DQ to mark the event! We told Erin that from now on we'll celebrate May 11 as her "other" birthday. With God in control, we have no doubt that this procedure will be successful and, as a result, will give Erin a new lease on life. We know that there is a long recovery road that we must navigate and we may experience "bumps" along the way before we can say we're finished but the Lord knows the way and we're letting Him lead.
Once again, we want to thank everyone for your prayers and words that have encouraged us. Please don't stop. We look forward to getting your messages daily. We would ask that you say a special prayer tomorrow for continued success as we go into this procedure. The power of prayer is a wonderful thing!
As Barb mentioned last evening's journal, during our stay here, we have met some very special people. To mention a few for prayer, please keep Jarad, a 4 year old going to BMT on Friday; Sidney, another FA patient now at day 90 and soon to go home; Andy, another BMT patient that is soon to go home; another friend that Katie made who is on her third kidney transplant and having problems; and others that I don't even know their names. All these kids are the bravest people I have every met and have found myself privledged to have met them. They forever will be in our thoughts and prayers.
That's all for now. We'll keep you posted. Until then, we love you all and miss everyone very much.....
-Kevin, Barb, Katie and Erin
Monday, May 9, 2005 8:20 PM CDT
Greetings, and thanks for checking on us!
First of all, Erin would like to send a special "hello" to all her friends back home. She has enjoyed receiving your cards and messages, and she misses you very much! Before long, she should be able to post a little message herself each evening. Watch for that in the future!
Erin is doing very well this evening, so I thought I'd try to update the web page a little earlier than usual. Her morning got off to a rocky start. Kevin called me just before 7 am to tell me that Erin had gotten sick very early this morning. Nobody has gotten much sleep in the last several days, and both he and Erin were completely worn out. When I arrived at the hospital at about 9:00, she had gotten sick again, and she had a reaction to some platelets that they gave her this morning (blotches/hives). The nurses gave her a medication for the nausea and a medication for the hives, and as a result, she slept for half the day. The sleep apparently helped a lot, because she was MUCH improved this afternoon. While she had almost no appetite whatsoever, she did finally eat a banana late in the day.
In spite of everything, her doctors assured us that Erin is not experiencing anything they were not fully expecting, and in fact, she is doing quite well. That relieved Kevin enough for him to leave the hospital and head back to the house for a short while. I have come to the conclusion that the nights are the toughest time at this point. If she's going to have a reaction to any of the chemo medications, it's going to be very late in the day. Tonight, she's doing incredibly well -- but it's early. I'm praying extra-hard that she will have a good, relaxing night ahead of her.
Her chemo medications are officially finished! Hooray!! She still has another 24 hours of fluid to flush her system, and she will continue to receive two medications tomorrow that will help protect her from graft failure, but the really strong medication is finished. We expect her to require numerous transfusions over the next couple of weeks until her counts begin to rebound after transplant, but she's become accustomed to that, and with her c-line in place it's really not a big deal.
As I sit here and look at her lying in her hospital bed, watching Animal Planet, bored to tears, I am in awe of her! She is absolutely remarkable. Realistically, we know that there will be tough days ahead, but judging from the way she's handled the last two weeks, I'm confident she's up for the challenge. Your prayers are having as much impact as the medicine that she is receiving! It is truly amazing. We simply cannot thank you enough for all of your prayers and support. There is no doubt in my mind that you are making a difference in the success of her treatment. We have the BEST support network in the history of great support networks! Thank you, thank you, thank you!!
Please continue to pray that any side affects from the chemo will be minor. Erin's nurse noticed the first signs of mouth sores, which I am told are extremely painful. We are working diligently to keep them from becoming a big problem for Erin.
Unfortunately, I have to cut this journal entry short because Erin is chomping at the bit to e-mail her friends tonight. In future journal entries, I hope to include some information on other patients we have come to know and care about at the Ronald McDonald house. I'm sure they would appreciate your prayers as well. You guys are simply the best prayer warriors I know!
More tomorrow! All our love.
- Barb, Kevin, Katie @ Erin
Sunday, May 8, 2005 8:28 PM CDT
It's storming here tonight. Katie and I just returned from the hospital, and this is the first time I've had to make the walk in the rain. Fortunately, it's was nice and warm here today so the rain was more of a nuisance than a real problem.
Erin had a good day today. When we left the hospital, she had not experienced any nausea from today's chemo, however, she had also eaten very little. I'm convinced it wasn't because she was not hungry -- but more because she was fearful that she would get sick if she did eat. We coaxed her into eating two bites of chicken noodle soup for dinner. Aside from that, she probably had a couple of saltine crackers today, and that's it. They are going to start giving her nutrition through her IV tonight after all of her chemo medications are finished. She has not lost any weight, and she is drinking enough fluids to keep her doctors happy, but they don't want her to suffer in any way from not eating enough right now, so as a precaution, they have decided to start her IV nutrition now. The doctor told me last week that 99% of the children who go through a bone marrow transplant will require IV nutrition at some point in their treatment.
Last night she began to run a fever (100.9 degrees). Anything over 100.4 is a concern, so they started her on Tylenol and an antibiotic, and they did a chest x-ray to rule out infection. It turned out to be nothing, and after that one high reading, her temperature returned to normal and stayed there all day. (Praise God!) Fever is the thing we fear the most, and we've been told to expect it as we go through her treatment. In most cases, it will turn out to be nothing, like last night. However, if it is infection, then it's a big concern. Her hives have not gotten any worse and, in fact, they look like they have improved. All in all, she's doing fantastic and Kevin and I are thrilled. It's still an incredibly tough thing to go through -- but so far, so good.
This evening, Erin started to complain that her scalp itched. I can't help but wonder if the chemo has begun to affect her hair. While we know it's coming, I dread it with every fiber of my being. If she handles this the same way she has handled everything else to date, she'll be discouraged at first, but she'll quickly make her peace with it and move on. My little trooper.
Today, of course, is Mother's Day. As you know, I was at the hospital last night with Erin. They are giving her a lot of IV fluids right now, and she's up frequently throughout the night. When she was up at about 3:00 am this morning, she surprised me with a home-made Mother's Day card, and several little packages that one of the Child Life Services women at the hospital had given her to give to me. She and Kevin had carefully wrapped each little item (a lipstick, several small bottles of lotion, and some perfume) yesterday, apparently before I got to the hospital. It was such a sweet moment when she surprised me with her card and gifts. At that time in the morning, I truly had forgotten completely that it was Mother's Day! She just beamed when she handed her card to me, and I was so touched I thought I was going to cry.
Katie and I got to spend the afternoon together. She had something specific she wanted to get me that she had seen at the Mall of America, and no amount of persuasion on Kevin's part could talk her out of this particular gift. The problem was, she had not been able to purchase it when we were there last week, and she had her heart set on getting this item for me. Since Kevin had hospital detail this afternoon, Katie begged me to take her to the Mall of America, and she purchased a beautiful figurine of a horse entitled "The Renewal of Life Pony" at one of the gift shops in the Mall. It is a stunning statue of a running horse, and the name of it is particularly profound. This is without a doubt the best Mother's Day I've ever had. I have never felt so blessed.
Please continue to pray that Erin's chemo will go smoothly. She is doing beautifully, and I know that is directly attributable to all the prayers being lifted up on her behalf. Also keep Jessica in your prayers as she prepares to make the long drive from Cincinnati to Minneapolis. We can't wait to see her!
We love you guys!
- Barb, Kevin, Katie & Erin
Saturday, May 7, 2005 9:14 PM CDT
Well, Erin finally got a computer in her hospital room, so I am typing this as she is sleeping next to me! I can hardly stand to be away from her anymore. She got sick tonight. Her nurse gave her some medicine to help with the nausea, and the medicine made her sleepy. She insisted that we call Kevin (who had taken Katie back to the Ronald McDonald House) immediately after she got sick. (I guess she just thought he ought to know!) I was scared to death that she was going to ask him to come and stay with her tonight. Kevin would have been here in a minute if she had asked him to come. In spite of my best efforts, there are times when only daddy will do, and I wouldn't deny her that for anything. But my nights with her at the hospital are precious. I worry constantly when I'm not with her. I actually sleep better on the nights when I'm here, even on the cramped little bed with all the interruptions. I guess I should be thankful that the medicine took affect before she decided that she needed Kevin here. The writing was on the wall.
I think Katie is beginning to realize that this is going to be tougher than she thought. Her days consist of school, dinner, and then she comes to the hospital for a couple of hours. It's especially tough on her when Erin is not feeling good during the time she is here. I think it scares her. Kevin and I have the luxury of seeing Erin during the day when she's feeling better. The chemo medication seems to take it's toll late in the day - - just about the time Katie gets here. I know Katie is feeling a lot of different things right now, and it's got to be a difficult, confusing time for her. She went to bingo on Thursday night on a mission to win something to cheer Erin up. After winning one game, she spent a good deal of time considering which prize Erin would enjoy the most, and finally chose a teddy bear. Kevin said it occurred to him that maybe she needed to be cheered up more than Erin did at that moment. He told her that since Erin's room is pretty small at the hospital, maybe she should keep the bear for herself and try to win something for Erin next week. In some ways, this is tougher on her than it is on Erin, and I am equally proud of the way Katie is getting through this.
Chemo is a frightening thing. It's almost like you take you child the brink, and then pray to God that he can bring them back. It also dawns on you one morning that there is absolutely NO turning back. We have begun this journey, and now we must see it through. As I have said many times before, I have complete confidence that we are going to get through this just fine. But it is much harder than I ever dreamed it would be. To see your child this sick has got to be the most difficult thing a parent can experience. A special thanks to everyone who is lifting Erin up in prayer each day. You give us the strength to face another day.
Erin is holding up very well. She does everything they ask her to do, and she never complains. The doctors and nurses are pleased with how well she is doing (nausea, hives and all!). She is a remarkable little girl, and we are incredibly proud of her.
I guess I'll close here. Tomorrow is chemo day #3. Only one more day of the heavy meds after that! Please continue to pray that any side affects she experiences will be mild. So far, you're prayers are working wonders! Thank you, thank you, thank you!
Until tomorrow...
- Barb, Kevin, Katie & Erin
Friday, May 6, 2005 9:05 PM CDT
Thanks for checking on us today. This was Erin's first day of chemo, and as you can imagine, it was a tough day. She was hooked to no less than 4 IV's from about 10:00 am on.
As Kevin said in our posting yesterday, the radiation took it's toll late in the day Thursday when Erin became very sick. The nurses, who said this was a very common side affect, gave her anti-nausea medication that made her sleepy. I spent the night with her in the hospital last night, and she slept from about 4 pm on. She awoke at 3 am this morning, feeling much better and ready for something to eat! (I was so relieved!) Her nurse last night told me that the nausea Erin was experiencing would be common for the next several weeks.
While we know that some of the side affects to the chemo may not occur for several days, Erin had an excellent day today (in spite of all the medication). She had a hearty appetite, and she was alert and active all day. She even helped me paint one of the windows in her hospital room. Katie and I left the hospital at about 7:00 pm tonight, and Erin was drowsy from some Benedryl that the nurse had just given her, but she was otherwise fine.
I got a call from Kevin a short while ago telling me that Erin appears to have developed some hives as a reaction to some of the chemo medication. This is a relatively minor side affect, and my prayer is that this will be the only reaction she has to the chemo medication she received today. The doctor on duty checked her out and said it did not appear to be anything to worry about at this point.
All in all, it wasn't as bad as I feared it might be. Thus far, she's had relatively few problems, and she has maintained her appetite, which is a huge plus. I don't expect that to last through the entire treatment, but I'll take it today with pleasure!
I don't want to stay away from the telephone for long tonight in case Kevin calls for any reason. Please pray that the remainder of Erin's chemo will go smoothly, with very few side affects. So far, so good!
As always, your prayers are appreciated more than we can say. We'll continue to keep you posted.
Until tomorrow...
- Barb, Kevin, Katie & Erin
Thursday, May 5, 2005 9:04 PM CDT
Greetings and thanks for checking on us. Barb is staying with Erin tonight so she has turned the pen over to me for today's update. I'll do my best.
Erin's first night in the hospital went fairly well, despite having vitals taken every four hours (8pm, 12am, 4am w/lab draws, 8am and so on). We got a good start on the room decorating (Barb says its still a work in progress). Erin was a little apprehensive about the Total Body Irradiation (TBI) schedule for today as we got close to bedtime. But it was nothing that a little "quality" rocking on Dad's lap and a heart-felt prayer couldn't put to ease. Katie held down the fort at the RMH (somebody had to keep an eye on Barb and Katie did a great job!).
We were to be one of the first radiology appointments this morning but, as it turned out, they were backed up and our appointment was delayed until 11:50am. Once in radiology, the technicians put Erin at ease and explained everything they would be doing. The procedure starts by a precise positioning of metal templates over Erin's lungs and a gland called the thymus. This was to protect these organs from the radiation. To our knowledge, Fairview is the only hospital using this protocol of covering the thymus. The thymus is responsible for aiding in the production of T-cells of the immune system and they are finding by covering the thymus, the patients immune system is rebounding quicker. That's a good thing when infection is your worst enemy. The radiation was given in four sections (upper front, lower front, upper back and lower back). Each section took approximately 16 minutes. With setup time included, Erin had to lay perfectly still for about an hour and a half. She did great!! We were so proud of her.
They had told us that most patients get sick and experience vomiting after radiation. Two hours after treatment, we found this to be true. Each step of this journey, I have found myself wishing I could take all the treatments and experience all the side effects for her. What parent wouldn't? It becomes so frustrating for a Dad not to be able to "fix it" for his child. I don't want to see any of our kids hurting but this is one time "I can't fix it". (But we all know who can, don't we!!) After some medication, Erin was asleep when I left this evening.
Erin's nurse told us that some of the most difficult days lay ahead of us in the next couple of weeks. Barb and I continue to find ourselves taking it one day at a time and trusting in the Lord for guidance. In the book of Jeremiah 29:11-12 reads, "For I know the plans I have you for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me and I will listen to you." Erin will start chemo tomorrow for the next five days. Her transplant will take place next Wednesday (5/11/05) sometime between 10am and 2pm. We'll know more precisely the closer we get. We need your prayers. We have people across the country praying for us right now, some we don't even know! But each day we are humbled by the notes of encouragement and the prayers offered on our behalf. They continue to give us strength to carry on. We know that this is God working through His people. Because of this, we can claim these words in Jeremiah with confidence.
Jessica is coming next week and we're all looking forward to having her here with us. Please keep her in your prayers as she makes the trip and her upcoming graduation on May 28.
That's all for now. Barb should be back at the pen tomorrow evening. Until then, all our love.....
-Kevin, Barb, Katie and Erin
Wednesday, May 4, 2005 9:13 PM CDT
Greetings! This will probably be a brief posting tonight. Kevin is spending the night with Erin, and I need to be at the hospital by 6:30 am tomorrow morning (her radiation appointment will be around 7 am).
Today went surprisingly well. We checked in at the hospital at 10:30 this morning. They took us quickly up to Erin's room (#213 on Floor 4A). It's a very comfortable room, and we have the luxury of an extra small room between the main hallway and Erin's private room. That gives us a little more space to work with, and we have an additional sink and storage area that some of the other rooms do not have. It also gives us an additional barrier to all the germs out in the hospital hallways! It took about an hour and a half to get all of the paperwork completed once we were in the room. The nurse on the floor (Jen) took us on a tour of the BMT unit, and we were free to go. We got back to the Ronald McDonald House at about 2:30, and we went to an early dinner together. The weather has changed dramatically from a couple of days ago. The majority of the college students were dressed in shorts today. That's especially hard to believe considering that we had snow showers only a few days ago. Katie and I walked home from the hospital at about 9:00 tonight, and we hardly needed a jacket. I hope the warmer weather is here to stay!
The nurses so far have all been great, and Erin is taking it all in stride. When I left her tonight, she was stretched out on her bed, spooling through the TV channels looking for "Orange County Choppers" (something Kevin has gotten her hooked on). He hasn't had cable television since we moved into the new house, and he's like a kid on Christmas morning now that he's got cable again. :{
We met one nurse today that I really LOVED! Her name was Amy, and she will be Erin's nurse practitioner for the next month or so. She was incredibly up-beat about Erin's transplant, and said that her experience with FA bone marrow transplant patients has been excellent. She said they seem to recover more quickly than other BMT patients, and she wouldn't be surprised to see Erin's counts back up in the "safe" range in only a couple weeks. That would be fantastic.
Katie had a pretty good day, too. She lost her room key somewhere today, and couldn't locate it to save her life. Then, she made a really cute sculpture of a fairy in art class, and it broke into several pieces as soon as she got it up to our room. She was discouraged, but she snapped out of it by dinner time! She's holding up really well, considering all of the stuff we've all had to go through. I'm really proud of her. (Now, ... if she could just find that room key, I'd be tickled pink! Ha!)
That's all for tonight. Thanks for checking on us! Tomorrow will probably be Erin's toughest day so far, so your prayers are especially appreciated. Thank you, also, for all the support we have been getting from home. Your cards and letters are wonderful.
A special "Hi" to Jessica! We miss you, and we can't wait to see you next week! We love you very much!
Until tomorrow...
- Barb, Kevin, Katie and Erin
Tuesday, May 3, 2005 10:32 PM CDT
Thanks for checking in on us today. In some ways, today was the best day we've had so far -- and in other ways, this was the hardest.
We finally got some beautiful weather, and it helped to cheer us. We spent the day doing mostly fun things, but we also made it a point to wrap up our last-minute "To Do" list as well. It's hard to believe that tomorrow we will be checking Erin into the hospital. She seems so healthy and energetic right now that it just seems wrong. I know in my heart that this is exactly the right time, but that doesn't make it any easier. She mentioned at bedtime tonight that she's nervous about tomorrow, and we assured her that everything was going to be fine. Truthfully, I DO believe that everything is going to be fine, but I also know there will be times along the way when she will not feel good, and that makes me miserable. I guess this is one of those, "Why couldn't it be me, God?" nights.
Kevin wants to stay with Erin tomorrow night at the hospital. (No surprises there! She's such a daddy's girl!!) After that, we'll be trading off every other night. That will give each of us some one-on-one time with Katie, and I think that's going to be very important. There will be days, I'm sure, when both of us will be reluctant to leave Erin. We'll just have to deal with those days when they get here. Hopefully, with God's help, they will be few in number.
Both of the girls have really made themselves at home here. They have gotten to know many of the other children, and they are having a ball. The folks at the Ronald McDonald House are so good at what they do! There is something fun going on all the time. I'm beginning to worry about how I'll keep the girls entertained after we get home! (Their expectations are going to be extremely high!)
Tomorrow, the schedule is: check-in at 10:30 am, do a little "fixing up" of Erin's room, and then be back to the house by 3:00 to pick Katie up after school. We plan to go to an early dinner at the Spaghetti Factory, and then get Erin back to the hospital. (Erin is required to check in tomorrow morning, but there are no restrictions to her leaving the hospital as long as she's back by 8 pm.) After tomorrow, our world will become very small. Kevin/I will try to update Erin's web page daily, but there may be days when we will not have an opportunity to do so. Hopefully, Erin will be getting a computer in her hospital room, and if that happens, we should have no problem keeping you updated. We will know a lot more tomorrow evening.
I guess that's it for tonight. We appreciate your prayers now more than ever. Please keep the messages coming, as they brighten our day more than you'll ever know.
We love you guys! Until tomorrow...
- Barb & Kevin
Monday, May 2, 2005 8:39 PM CDT
Greetings! Thanks for checking on us. Today went well. We had our last doctor's appointment prior to Erin being admitted. We met with a cardiologist who reviewed Erin's echocardiogram, and she said Erin's heart was in excellent shape. I am so encouraged by all of her test results! She is truly in the best shape possible going into transplant.
Erin continues to discover new areas of the Ronald McDonald House to explore (... this place is HUGE!). She found a game room on the lower level of house #4. It has a ping pong table in it, and several other arcade-type games. Erin spent the day begging each of us to play ping pong with her. I ventured down to the game room once this afternoon for a game. After a couple minutes, it was clear to me that this was going to be no normal game of ping pong. I decided the only way to keep the game moving was to "play the ball where it landed." It was like an aerobic workout! Most of the time, I was playing the ball off the wall, or off a piece of furniture in the room. Just for the record - - you don't necessarily have to have a ping pong table to play ping pong with Erin.
Tonight, Katie and I took a shuttle to a local grocery store. There were several other mothers on the shuttle with us. You honestly can't help but feel blessed when you hear what these other families are going through. One woman's teenage daughter is here for her third kidney transplant (transplant took place in March), and her body began to reject the new kidney almost immediately after transplant. They are now undergoing some experimental treatment to try to keep things from getting any worse. Another woman has a 4 month old son (her first child), and he is being treated for a very rare illness where he cannot eat or swallow. She said she expects to be here until late summer as well. Another woman has a five year old son who underwent a bone marrow transplant about a month ago. Her son has had numerous complications. She said he has seen a specialist in virtually every area of medicine at the hospital so far. It's staggering. The one thing all of these women have in common is their underlying faith that God is going to bring their families through each situation. I was inspired! I've been a basket case since Erin was diagnosed. So far, our journey has been a piece of cake compared to what these women have gone through, yet their faith has sustained them. I'll say it again -- we have been blessed beyond anything we deserve, and we are so grateful!
We have set aside tomorrow as a family day. We're heading to the aquarium, and then to the Mall of America. We've been trying to pick up a few things here and there to decorate Erin's hospital room. We've decided on an "aquatic" theme. I've found several items for her room that are really colorful and cheerful. With summer right around the corner, there is no shortage of fun "fish" stuff at the stores, so we've gravitated in that direction. I also picked up a couple sets of really bright, colorful sheets. It should be a fun space when we're done with it! I've even been told I can paint the windows in her room. If it turns out the way we've planned, they'll be talking about her room long after we're back home in Cincinnati!
As always, we continued to be touched on a daily basis by the kindness, generosity and thoughtfulness of our friends and family back home. How families get through this that don't have the support network we do is beyond me! You guys are the greatest and we love you!!
Thank you for your continued prayers. Until tomorrow..
- Barb
Sunday, May 1, 2005 9:25 PM CDT
Hope everyone had a great weekend. Ours was good. We tried to do as much as we could because this will be Erin's last weekend to be "out and about" for a while. Grandma and Grandpa McKee arrived safely on Friday afternoon. We got to spend a good deal of time with them, and it was very nice. We went to the Mall of America on Saturday, and to the Minneapolis Children's Museum on Sunday. There were times this weekend when we forgot the reason we were up here. We were just out having fun together. It was great!
Joyce and Gil will head back to Cincinnati tomorrow morning. Erin has one appointment with a cardiologist mid-day, and then she's free and clear until Wednesday. The cardiologist appointment should not present any problems or reveal any new information. It's just a precaution her doctor wanted to take (having the cardiologist review her EKG) before her transplant. We have to check-in to the hospital at 10:30 am on Wednesday, but we're free to leave the building after that. She'll just have to return by Wednesday night. I'm thinking maybe we'll spend a little time getting her room set-up, and then we'll go out for a family dinner.
When we met with the social worker assigned to Erin at the hospital, she said they have a chaplain on the BMT floor who will come to the hospital the day of Erin's transplant and conduct a "blessing" service in her room before her transplant begins. She wanted to know if this was something that Kevin and I would be interested in, and we couldn't respond "YES" quickly enough! I had been thinking about what we might do that day to commemorate the beginning of Erin's recovery, and this was exactly what I had envisioned (naturally, we would have loved for Pastor Dazet to conduct the service, but I think asking him to drive 11+ hours for a brief service would have been a bit much). I know that you will all be in that room with us in spirit and in prayer, and that is good enough for us.
Thanks to everybody for your continued support with your cards, e-mails and website messages. You have no idea how much we enjoy hearing from you! We read every message over and over again. This website has been such a blessing to us. It's wonderful to be able to communicate with everybody each day. Both Katie and Erin are thrilled to hear from their friends and classmates. It helps them to realize that they are not being forgotten back home.
I expect tomorrow to be a quiet day here. Since we have nothing scheduled at the hospital on Tuesday (that we know of), we may take the girls to the aquarium at the Mall of America. That's our schedule for the beginning of this week.
It's been really cold here! We've been trying to walk back and forth between the hospital, and the hotel where Joyce and Gil were staying (about 4 blocks) - but by late today, we just couldn't do it anymore. We've had snow showers off and on all weekend long, and the wind has been ferocious. It looks like the temperatures are going to improve a lot in the coming week. I'm looking forward to that!
That's the latest from this end. As always, we appreciate your prayers. Hope everyone is doing well. We miss you!!
P.S. Contratulations to Chris & Sheila Miller on the birth of their new baby girl! We can't wait to meet her!
Friday, April 29, 2005 5:15 PM CDT
It's hard to believe we've only been here about a week! It feels like months since we've seen our friends and family.
Our visit with Erin's doctor this morning went well. There were no surprises in her test results. There have been no new developments since her last series of tests in Cincinnati, so that was great news. Overall, she's in excellent condition going into transplant. We also went ahead and signed the consent form to officially move forward with her transplant. (That was probably the most important document we have ever signed.) Not surprisingly, her doctor needed to review all of the worst case scenarios with us before we signed the consent form. No matter how upbeat you are going into this, it's a sobering experience to have the doctor list all of the possible things that can go wrong. We just have to keep reminding ourselves that Erin is in God's hands, and there is no better place to be at a time like this.
Bingo night was a SMASH! It took them 25 minutes to unload the "prize" cart before they could even start playing. I was absolutely amazed by the goodies up for grabs! I had signed up to take a shuttle to a local grocery store while the games were going on. You can bet I'll think twice before committing to anything again on BINGO night! (Ha!) The girls had a great time, and both of them won pretty cool prizes.
One night a week, the Ronald McDonald House hosts "movie night." It's a pretty cool thing, and we made it a point to attend this week. It ended up being Kevin, me, and about a dozen kids in the theater room on the lower level of the house. I couldn't help but look around during the movie. There were kids of all ages, some siblings, and some patients - struggling to overcome illnesses that are cruel beyond words. And yet, for that hour and a half, I saw kids laughing, eating popcorn and just being kids. There were no worries about illness, test results or treatments. It was like we were all magically transported to someplace where there is no sickness and no sadness. It was amazing -- a little bit of heaven right here in Minneapolis! If I ran the Ronald McDonald House, we would have "movie night" every night of the week.
One thing is for sure -- we will never be the same for having gone through this time. We will never take for granted the blessings that God has given us, and the time He has given us to be together.
As always, thanks for checking in on us. It's all good.
More later.
- Barb, Kevin, Katie & Erin
Thursday, April 28, 2005 4:06 PM CDT
It's Thursday, already!! Tonight is a BIG night at the Ronald McDonald House. It's BINGO night! Whoopee! (Ha!) Actually, they tell us it's a lot of fun, and the girls are watching the clock waiting for 6:30 to get here. (Ah, to be little again!)
Today went pretty well. Kevin took Erin to her first appointment this morning (7 am), and I stayed at the house with Katie. Every day this week, we've abandoned her at the crack of dawn to take Erin to an appointment at the hospital. One morning, she insisted on getting up with us, and she was dressed and ready for school 2 hours before classes started. We left her sitting in the kitchen area of the Ronald McDonald House, all by herself, more than an hour before she could even get into her classroom. It broke my heart. I really just wanted to spend a few extra minutes with her this morning.
The worst of Erin's tests are over. Tomorrow, we meet with her doctor and he will go over the results from all of the tests she's had this week. While I don't think they are expecting to find anything alarming in any of the results, I know I will be a nervous wreck before our meeting. Today, Erin had so much blood work done that when we went to do her labs this afternoon, they could not get enough blood from her catheter to fill the "order." I was afraid there was a problem with her C-line. (It scared me to death!) Turns out, everything was okay.
We've been trying to go out for dinner when we can, simply because we know that the day is quickly arriving when going "out" will be a luxury we won't have. Last night, it started to spit snow while we were still a couple of blocks from the house. (Most anything we need right now is within walking distance of the Ronald McDonald House.) I hated to have Erin out in the cold. Today, it's clear and cool out. We may venture out for a pizza shortly. (But, of course, we'll be back in plenty of time for BINGO!)
Erin is a little trooper. She takes it all in stride. I'm so proud of her! She misses her friends (we all do!), but she's still very upbeat. She has been really tired each afternoon after our trips to the hospital, but after a good nights sleep, she's ready to go again.
We're all looking forward to the weekend. No tests, no visits to the hospital, just some quiet family time. Joyce and Gil (Grandma and Grandpa McKee)will be here on Friday. We are all looking forward to their visit.
That's the latest. Thanks for checking on us. As always, your prayers are greatly appreciated.
More later.
- Barb, Kevin, Katie & Erin
Wednesday, April 27, 2005 3:32 PM CDT
Happy Wednesday. Another day down. This one went pretty well. No difficult or uncomfortable tests today. (Much better than yesterday!) Today was mostly x-rays and meetings. They did her first set of labs through her C-line, and it thrilled Erin that there were no pokes involved! (I guess every cloud has a silver lining.) We even got a break long enough to grab lunch between appointments, so it was one of our better days so far. We are getting pretty settled in here. It's comfortable, and it's close to the hospital, so we really couldn't ask for a better situation. I've begun to recognize other families that are staying at the Ronald McDonald House when I see them at the hospital during the day. As I type this, I'm sitting next to a mom whose son (maybe three or four years old) recently underwent a heart transplant. There is another little boy sitting next to me (maybe 11 or 12 years old) who is obviously going through chemo. I never cease to be amazed by how resilient these kids are. In my entire life, I don't think I've ever met any braver souls than these kids.
It looks like Erin will be admitted to the hospital next Wednesday. She will get radiation on Thursday, and her chemo will begin on Friday. There will probably be a period of several days before any of the side effects of the chemo kick in. We met with a Child Life Coordinator (Jason) this morning, and he explained to Erin what the next couple of weeks will be like. Erin really liked him, and I think he helped to ease some of her anxiety. After talking to Jason, her biggest worry is how she's going to decorate her hospital room once she's admitted. (The apple doesn't fall far from the tree!)
We also want to let you know how much we enjoy receiving your messages via this website. Checking the website each evening is rapidly becoming the highlight of our day - - so thanks for taking the time to write to us! We are encouraged and touched by your kind words. Your prayers are appreciated more than we can say.
More later.
- Barb, Kevin, Katie & Erin
Tuesday, April 26, 2005 4:55 PM CDT
Thanks for checking in on us! Day #2 down. Not as good as yesterday, but still a fairly good day. They put Erin's central line in today. We had to be at the hospital at 6 o'clock this morning. Erin didn't come out of the anesthesia quickly, so they moved her up to a room, and then there appeared to be some confusion about whether or not she was supposed to be admitted! The stress of the day seemed to take it's toll on her. She looked exhausted and really pale by the afternoon. We finally got back to the Ronald McDonald house at about 4:30 this afternoon. Ironically, once we set foot back at the house, her energy returned and she was back to her old self! Amazing!!
The next two days are filled-to-overflowing with meetings and tests. Fortunately, now that we have Erin's central line in place, there will be no more "pokes." She did have a CT scan this afternoon, and while it was not uncomfortable, apparently it scared her. She will have two more similar x-rays on Thursday. I plan on spending some time talking to her about it beforehand so that, hopefully, she won't be so anxious the next time.
All in all, she's done extremely well, and I am incredibly proud of her. Katie has made a couple of new friends already, and she seems to feel pretty comfortable. I am thankful for that, too.
Today was a pretty good test for what lies ahead, and I have to tell you, it was a really tough day for me. I hated every moment of it - - but I am confident that it will all be worth it in the end. Please continue to keep us in your prayers. There were several times today when I know that your prayers were what helped us get through.
Katie received a box of cookies from her classmates back home, and that just thrilled her! Thanks guys!
We miss you all! More later.
- Barb
Monday, April 25, 2005 6:33 PM CDT
We made it! Our drive up was pretty uneventful. The weather cooperated - - sunny skies and mild most of the way. After a sleepless night last night (for Kevin and I, anyway), we headed off to the hospital for our first day of testing. It wasn't nearly as bad as I expected. After the initial blood draw (... one of the things Erin dreads the most), the rest of the day went extremely well. We have a variety of tests and meetings scheduled between now and Friday, and then we'll get the weekend off (Great news because Grandma and Grandpa McKee are coming up on Friday!). Though we are not positive of the date yet, it looks like Erin's transplant will take place on, or about, May 11.
We have to be at the hospital at 6 AM tomorrow morning. They will be putting in Erin's central line, and doing a bone marrow aspiration. Once her central line is in place, there shouldn't be any more "owies" before transplant. She's pretty excited about that! We have a couple of really full days ahead of us, but by Friday, things should slow down a bit.
Great News!! God's already answering our prayers. We were able to get into the Ronald McDonald House today!! That's at least a week sooner that we first thought. We decided to go for a walk around town when we arrived yesterday afternoon, and we stopped by the Ronald McDonald House just to look around again. When we got here, the house manager said she had just left a message for us at the hotel telling us they had a room for us beginning tonight! A coincidence??? I know better!! We were absolutely thrilled. Now, we're here and getting settled in for our stay.
Katie started school here this morning, and she had a very good day. The teacher's name is Cindy, and she's delightful. Katie is the only girl in a class with 6 boys (for now, anyway). The teacher was thrilled to have another girl in the class!
So far, so good! Thanks for checking in on us, and as always, thanks so much for your prayers! They are making a difference.
More later!
-Barb & Kevin
Wednesday, April 20, 2005 9:03 AM CDT
Greetings! This will be the first of many journal entries over the next several months. My hope is that there will be lots of good news to share with our friends and family! Right now, we are overwhelmed (no surprises there!). I have a tough time getting ready for a week-long vacation, so preparing for a 3 month trip is almost beyond comprehension. Regardless, come Saturday morning, we will be embarking on the adventure of our lives (thus far). We are taking with us the good wishes, hopes and prayers of many friends and family members - - and that is making the trip much, much easier. As always, we appreciate your prayers for Erin more than we can say.
More later!!
- Barb
Monday, April 11, 2005 12:23 AM CDT
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