My Post-BMT Journal

I MADE IT!!

August 23, 1999 Day +108

Now....how am I feeling about our departure? Well.....I feel at least a hundred emotions. I feel triumphant and trepidatious, confident yet cautious, ecstatic, yet somehow a bit uneasy. By far though, the most overwhelming emotion I feel is a VERY deep gratitude to the doctors, nurses and support staff and the donor that gave Katy her second chance at life. She got first rate care, at one of our country's finest Pediatric medical facilities. And somewhere in this world, there is a 38 year old man who gave a part of himself to a little girl he doesn't even know. You simply can't ask for more than that.

From the way I'm writing, you'd think this was the end of Katy's story, but the truth is, it's far from over. Sure, we've cleared a big hurdle, but there are still many potential obstacles on her road to recovery. Katy has the immune system of an infant. Any illness which causes a fever will require a hospital admission for quite some time. She will still be taking medications, making clinic visits, and being cautious about who and what she comes in contact with for months. The crucial period for rejection of her marrow is about 18 months post BMT. Though it appears that Katy's graft is as solid as a rock, the truth is, her marrow is just learning how to live in it's new home. We hope it learns to like it there, and takes up permanent residence.

What have I learned from this? Well....that's a novel in and of itself, which someday I DO plan to publish. I think the biggest lesson I have learned is when to STOP, BE QUIET, and appreciate the divine way in which our lives unfold. Everything happens for a reason. Miracles and tragedies, the way in which special people touch our lives....it's all part of a bigger plan. We may not be able to see this through our tears at times, but it's true. I am a VERY different person than I was 2 years ago. And despite Katy's illness being the most difficult and terrifying two years of my life, I have grown in ways that I never could have imagined. A part of me that was buried very deep has been "awakened", and though I would never have wished for Katy to go through this, I am so grateful that I was able to be witness to her healing.

August 26, 1999 Day +111

Our trip to the Windy City this morning went fabulously. Katy's counts were still pretty good, her ANC was 3800, her Hgb was 10.1 and platelets were 251k. Her energy is great...she ran around the clinic like a nut because she was so happy to be back at her old "stomping grounds." When she finally set eyes upon her doctor, she ran across the room and embraced him as if he were a long lost love. (His heart was sufficiently melted.) They are feeling so positive about her status at the moment, that after next Tuesday's clinic visit, we will go to once weekly visits. HOLY SMOKES!! What WILL I do with all my time?

I, on the other hand, seemed destined to crash and burn. I felt tremendously exhausted all day. My butt was dragging big time. I woke up with a monster headache that lasted about 5 hours. I think what is happening is what I'll label "caregiver meltdown". While in Houston, I was wearing blinders. My sole goal in life at that time was to take care of my daughter. I thought of and did little else. I got by on very minimal sleep, tolerated strange mealtimes, and generally neglected myself for almost 4 months. Well, folks....I think it's catching up with me. Is there such a thing as "Post BMT Caregiver Stress Disorder"? If so....I am self diagnosing with PBMTCSD. (Gotta have the cool initials...makes it seem like a real disorder!) Symptoms: Extreme Exhaustion, Mental Fatigue, and a general feeling of ..."Oh....MY......Lord. WHAT just happened? I can't believe that we just did that!"

September 5th, 1999 Day +121

We are starting to settle in to what one might consider to be a somewhat "normal" lifestyle. Katy only needs to be seen in Chicago once a week for counts (which are still fine) and she is currently at the end of a prednisone taper, which is her LAST drug! She will still need two months worth of IVIG infusions, but otherwise, she is doing fine & dandy. She has TONS of energy, and is really eager to get back to school. She is SO happy to be home, and so am I. We are taking great joy in the "little things" these days, like family dinners, and just hanging around doing NOTHING! In fact....doing nothing is actually quite refreshing for us. We could get used to this!

September 7th, 1999 Day +123

Katy's days as a "Pred-head" are officially over. Never before have I felt so negatively about a drug as I do about prednisone. Monday was her last dose, and I can't even describe to you the relief that our whole family feels. Aside from the almost constant hunger, and her extreme moodiness and restlessness, Katy is doing VERY well. In fact, I felt good enough about her progress that I agreed to send her to the home of some very good (and VERY brave!) family friends for the weekend so that we could do some serious cleaning around the house. My mom (a.k.a. "Mr. Clean meets Martha Stewart") has been working her butt off, and David had Monday off, and got quite a few "projects" completed. The house is really shaping up, to the point where I can actually relax and feel comfortable at home. In fact....it's rumored that I may have had two or three COMPLETE thoughts about absolutely mundane things that have nothing to do with Katy's illness or BMT. Each day, I feel a little more at ease with the situation. However, don't mistake "comfort" for complacency. Every sneeze, cough or sniffle still sets off the various bells and buzzers. I know that someday, this will be a distant memory, but for now, it's still so fresh. The wounds are healing, but we still feel vulnerable.
Katy had another clinic visit this morning, and her counts are beautiful (WBC 4.7, Hgb 10.6 and platelets 266k). Her Doc and I chatted briefly about having her line removed ASAP. She still needs 3 monthly doses of IVIG, but other than that, the line is only a source of infection because it is not being used. Thanks to EMLA (a lidocaine creme) and a pretty high pain tolerance, Katy does not have any major aversions to having a regular IV started, or getting her CBC drawn peripherally. So...hopefully next week, we can kill two birds with one stone, by getting her IVIG and her line pulled the same day. I think for ME at least, having her line pulled is a bit symbolic as well. Other than her REALLY short hair, there won't be any visible evidence of what we've been through. I think Katy would just like to have it out so that she can splash in the tub!
As our lives have been taking on the appearance of being somewhat "normal", I have been doing a lot of thinking about precious Kay-ci. Thoughts like, "SHE should be laughing and playing and enjoying life, just like Katy." and "HOW are her parents coping with the loss of their daughter?" When I see Katy dancing and singing, smiling and giggling with her girlfriends, I can't EVEN begin to imagine what my life would be like without her. Why do some kids die, and some survive? More importantly....why did Katy survive and Kay-ci didn't? Two very special, sweet and loving little girls, with SO much life to live and so much to give the world, and one makes it, and the other doesn't. Don't get me wrong....I am deeply thankful that Katy is alive and has a chance at life, but it just doesn't seem fair that they all can't make it. I know....I know, "Classic Survivor's Guilt" with a Caregiver twist. I can see it for what it is...but that doesn't stop it. Someday, I plan to try and make sense of all this. In the mean time, we plan on just plain LIVING. Taking joy in the little things, simplifying and appreciating our lives.

September 17th, 1999 Day +133

Okay friends....it's time for another one of "Mary's special word pictures". Now....when you're done reading the following paragraph....close your eyes and visualize this....
Katy is strapped into the front seat of the van, wearing a fluffy yellow sweatshirt, a pink hat and those NASTY polyester "hospital" PJ pants. (Other parents of sick kids will know what I mean.) On her feet...white socks and no shoes. Oh yes....and no undies. This creative fashion statement in courtesy of a potty accident she had while coming off of the Versed she was given as a part of the conscious sedation for her line removal. Yes....the poor baby even got her canvas tennis shoes soaking wet!
Picture Katy and Mommy tooling down the road, singing the following song....sung to the tune of "Mary Had a Little Lamb" (which I do...:o):
" Katy is all better now,
Better Now....better now!
Katy is all better now,
She's a healthy girl!"
Katy is smiling, laughing and bouncing around. Hanging from the rear view mirror, like a pair of fuzzy dice, is Katy's central line. We got a couple of funny looks when we were stopped at stoplights, but Katy thought that hanging it there would be funny, so I did. Some people have their baby's first pair of shoes, some hang stuffed animals...I have my kid's CVC line hanging there! I think it's entirely appropriate.
Overall, we had a pretty great day. Katy was welcomed back at our "home hospital" with a huge fanfare by the FABULOUS staff there that has opened their hearts to her. When we arrived in the clinic, her Dr. had a nice welcome home gift for her (a stuffed "Katybug") and when we arrived on the floor, Katy was escorted to a reverse isolation room that the nurses and support staff had decorated with streamers and balloons. (Thanks so much Jenny, Naomi, and everyone else who helped!) Katy was in her glory, seeing all the medical personnel who have become a second family to her these past two years. They even threw a welcome home party complete with gifts (you KNOW Katy loved that!) and a cake. They even got ME a gift! So....Carle staff.....you guys are the BEST. We love you all like family, and appreciate your ability to recognize that Katy's spirit needs nurturing just as much as her body does. God Bless you all. We also had visits from other friends throughout the day, and even our special friend Trish from the blood bank stopped by to shed a few tears of joy! Katy, Trish and I will be traveling to Sea World in Florida next month to attend the kickoff for the "Give a Pint for a Half Pint" campaign for America's Blood Centers. We plan on having a blast....so please pray that Katy can stay healthy and strong so that we can really enjoy it.

September 29th, 1999 Day +145

We have been enjoying life, which is still rather hectic, but in a good way. This morning, the doorbell rang and it was the FedEx man. I was expecting a sample kit for Katy's blood draw that is due next Tuesday (we have to mail all the "big" tests to Houston) and Katy got all worked up when she saw the package. Turns out is WAS indeed a sample collection kit, and you should have seen her little dejected face. I signed for it and off went the FedEx man. He pulled away, and then EEEEEeek.....put on the brakes and "beep-----beep----beep" put his big truck in reverse. Lo and Behold, he emerged with ANOTHER package, shaking his head. "Sorry.....looks like I have another one for ya." Confused, I signed for it, and when I saw who it was from, my heart skipped a beat. It was addressed to me, but was from the BMT coordinator at TCH. Katy was already off watching cartoons, so I opened the box, and found three packages and a letter, addressed to "Recipient #944-431-6". WOOO HOOO! It was from our donor! By now, Katy had noticed the bright pink packages, and was jumping up and down, shouting "Those are for ME right?" (Think she's a little spoiled?) I gave the gifts to her (two videos and a Barbie....she was thrilled!) and I sat down, the letter clutched in my very shaky hands. I just sort of held it to my heart for a second (that's how I feel about our donor...he's in my heart.) and then I opened it, and read it, with tears streaming down my face. I won't quote anything from his letter, I want to protect his privacy, but let's just say that he is truly the wonderful person that I had imagined. His handwriting is so beautiful that he couldn't possibly be a doctor. (grin) I can't really explain the connection I feel with him, except that EVERY single day, I think of him and how he saved Katy's life. Only 7 more months until our family can meet him and express our gratitude for what he has done. Katy already thinks "Jack" (her name for him) is the coolest....after all, he knew to send a "Color With Me" Barbie!

Oct. 4th, 1999 Day +150

This morning we rushed off to a dental appointment, and after the dentist pronounced all three kids cavity free, we rushed back to school, and Katy broke into a sprint to get to her classroom. She arrived to a hail of welcomes and hugs from her schoolmates and her teacher. I had forgotten her mask, so I had to go back home and get it, but otherwise the day went off without a hitch. Katy will have an adjustment period....there's no question about that. She is going from absolutely no structure, to quite a bit of it, so her teacher and I are doing our best to prepare for the inevitable bumps in the road. She had a couple of "bumps" today.....first, she got frustrated when she couldn't complete an activity, and she cried. She is having a very difficult time with anything that requires fine motor activity...especially writing. Her hand tremors make writing so much more difficult than it used to be. The staff at school is working on identifying the areas in which she needs the most help, and addressing those first. Also...she failed a vision test. The teacher who administered the test isn't sure if it was actually a vision problem, or if she was too excited or distracted to comply, but they'll retest her vision in a week, to see if anything has changed. She could see and correctly identify all but the last line, so it's hard to tell....just something to keep an eye on. Some post-BMT patients who have TBI as part of their conditioning develop cataracts, so it could be this, or maybe another vision problem that needs to be diagnosed.
For now, we are all doing just great. I'm even considering looking for a part-time job very soon, maybe just a Christmas/Retail thing. I'm a little weary of making any commitments because despite all of this "normalcy", Katy's health is still very tenuous. In her doctor's words, she has a "very low threshold for hospital admission", which means that any little thing can land her inpatient. Any fever, vomiting, or out of the ordinary complaints...and we're back in the slammer. This "in between" situation may prove to be more difficult than we expect, but we'll see how it pans out. Many people see Katy, and since she looks so good, they tend to think that the whole ordeal is over, when in reality, it's far from over. It's difficult for people to comprehend how a child who is happy, smiling and full of energy can catch a virus or infection that might endanger her new marrow graft. It's a real balancing act. On one end, we are struggling to normalize our lives, and on the other is the reality that we are still at the mercy of Katy's health. Hopefully, the scales won't tip!

Oct. 22 1999 (Day +168)

Last week, our mission was to crack the "mystery of the missing red cells", and this week, we believe the case to be solved. Katy has been diagnosed with Post-Transplant Nephritis. This condition was likely caused by the either the chemo or the radiation used as conditioning for her BMT, or a combination of the two. In short, the vessels that lead into and out of the kidney are damaged, and red cells are destroyed as they pass through. In addition, the kidney fails to produce the erythropoetin, which is the "signaling substance" that tells the marrow that it needs to make more red cells. As a result, Katy's Hgb has been dropping steadily (now down to 8.1), but her other counts are stable. Her blood pressures have been very high (133/103) and she is back on Nifedipine to control that problem. We will visit clinic Friday to see if her Hgb has dropped further, and if she needs a PRBC transfusion. We will also evaluate whether or not she might benefit from restarting 3x weekly Procrit injections.

The doctors inform us that this is normally a self-correcting syndrome, and it may take anywhere from 4 months to a year for her kidneys to heal. We have not yet discussed what further treatment may be necessary if they don't heal on their own, and for right now, this is fine with me. I don't even want to think about the "what-if's" at this point.....I just want to concentrate on the present.

Oct. 27th, 1999 Day +173

Katy is making small improvements, and her blood counts seem to be stabilizing, and maybe even heading upwards a bit. The nephritis in her kidneys doesn't seem to bother her too much on a physical level, except that her blood pressures have been pretty hard to control, so she is back on twice daily meds to help that. The med (Nifedipine) does a great job, but it also contributes to her tremors, and she's pretty jumpy.
All in all, our lives seem to be more on an even keel these days, and I will even be starting a new job soon. Katy is enjoying school, and we are looking forward to the holidays OUT of the hospital!

Nov 5th, 1999 Day +182

Hey guys....just a quick update to let you all know about our latest bump in the road. We reported to clinic yesterday, and Katy's CBC showed that it was time for a red cell transfusion, but her renal functions are worsening. Her potassium level was high, and there was some concern that a transfusion might add to her potassium load, which can cause dangerous heart arrhythmia. Hmmmm. The rock and the hard place again.....it's becoming a very familiar place for us! After a little research and a recheck of her K2 levels, it was decided that she could be transfused safely.

We reported to Expanded Care in the early evening and got those red cells rolling. She did well during the transfusion, but towards the end, her blood pressure started to rise. She had already been given her blood pressure meds, so the only thing we could do was watch and wait. Her post transfusion BP was extremely high (152/110) and she was saying that she felt dizzy, though she had no headache. After it stayed very high for an hour or so, we paged her doctor, who agreed that she needed to be admitted for the hypertension and observed overnight. They gave her some Lasix (a diuretic) which made her pee like a racehorse, and within two hours, her BP was back down to acceptable levels, but we stayed overnight anyway. We are still here today, waiting for the results of her repeat CBC and renal panel, and then hopefully, if things aren't too whacky, we can head home.

Needless to say, I'm very tired (sleeping--or not--in a chairbed...oy!) but Katy is feeling great, and is so comfortable in the hospital, she seems almost happier and more energetic here than at home! In fact, when we told her last night that she was being admitted, she threw up her arms and shouted "YES!!!" This kid knows how much the nurses and staff up here adore her and spoil her. Anyway, please continue to keep her "stupid ole' kidneys" in your prayers....they certainly aren't doing their job right now, and we could really use a break!

Nov 19th, 1999 Day +196

I had intended to send out an update on Katy last night, but I was a bit unsettled after watching the segment on Dateline about the young lady who had kidney failure after her BMT, so I figured it would be better to sleep on things and calm down, before I sent out some hysterical and foreboding letter. Oh....and my second line of reasoning is that David and I were actually home ALONE together last night....all 3 kids had "sleep over" plans with friends. We had a nice dinner, watched TV, and generally enjoyed the silence. It was nice....and we decided that we should do it more often.
Anyway....I'll share briefly with you all a few of the fears that last night's broadcast generated, however irrational they may be. Let me preface by giving a synopsis of what the segment on Dateline was about for those of you who missed it.
A 23 year old teacher was diagnosed with leukemia, and though her first round of chemo put her into remission, she relapsed a year later. She needed a BMT, and had no related matches, and so one was found for her on the NMDP registry. She proceeded with the transplant, did well, and remained leukemia free for 4 years. Then....can you guess what happened? Her kidneys started to fail. (Hmmm.....this is starting to sound hauntingly familiar, isn't it?) After a year of progressively worse kidney function, she developed End Stage Renal Disease, and needed to have a kidney transplant. The happy side of this is that her original bone marrow donor, (who keep in mind, is NOT related, and obviously an angel on earth) after much thought, agreed to donate a kidney to her recipient as well, and the surgery went wonderfully, and they are both now healthy and thriving. Of course....by the end of the segment, I was bawling my eyes out. Watching it was like revisiting many of the issues that we faced during and after Katy's BMT. I guess I hadn't realized how raw some of the emotions still are. I thought that they were resolving themselves fairly well....but NOPE! There they are....right on the surface, ready to remind me of the terror and fear, the sleepless nights, and the grief of losing Kay-ci. But, the segment also made me realize the triumph that Katy is still here....her new bone marrow works great, and how deeply thankful we are to "Jack" our donor. I wondered if he was somewhere in the country watching too....if his eyes were full of tears, and if he is as anxious to meet us as we are to meet him.

Nov 28th, 1999 Day +205

Katy and I will be heading off to Houston once again tomorrow for her 6 month follow-up appointment, as well as a Nephrology consult, and a possible Neurology consult. The good news is that Katy's kidneys appear to be healing themselves...hooray! Her renal numbers yesterday were just a tiny bit better than last week's, and though it may not be considered clinically significant, the fact that things are "trending" in the right direction means more than any single lab number. Needless to say, I am one very happy camper, though I'm not singing and roasting weenies around the campfire yet.....but I'll get there one day!
The downside of all of this is that her blood pressures have been NUTS these past few days. We have been faithfully taking her BP'S, and administering her BP meds every 12 hours, but sometimes towards the end of the 12 hours her BP starts to "break through" the meds, and we need to give it sooner, rather than wait. High blood pressures (like the 150/130 we got after the Thanksgiving meal, and which upon Mommy's disbelief was confirmed by taking it in the other arm) for prolonged periods of time can be very dangerous, so we're trying to be vigilant. If it remains high, it may be necessary to add some more BP meds PRN (or "as needed") to keep things under control. A really high BP can do some obvious damage, like causing a stroke, or it can do more subtle damage that we can't see, like further damage to those little vessels in her kidneys that are trying so hard to heal. She's getting a bit tired of "having her blood plessure" taken (yeah...I spelled it wrong, but that's the way she pronounces it), but my thinking is, if that's the worst part of her day, she's one darn lucky kid! Hopefully, the Nephrologist in Houston will have a good plan of attack ready for us after his evaluation on Tuesday.
Also, Katy had a neurology consult at home this past week. She has been booked for some more in-depth Neuropsych testing, as the initial consult did identify some problems with working memory, language sequencing, and left-sided weakness. She is still has hand tremors and problems with fine motor skills, and it's unclear if they are temporary (from meds or late effects of treatment) or permanent....likely caused from damage to her brain from the radiation, or the Cyclosporine. Either way, it's really important that we develop a good treatment plan, so that she can be helped as much as possible in school. Right now, we have some adaptive techniques in place....like she types her journal writing instead of writing it, but it would really be beneficial to know what areas we can expect that she'll need extra help in. I will say this though....every day, I see a little tiny bit more of the "old Katy" peeking through the mist. Her progress is painfully slow at times, but it IS progress, and for that we have to be grateful.

Dec 8th, 1999 Day +215

David spent the day with Katy at clinic today, because I was working. They first reported to the Neuropsych dept. for some extensive testing, and she has another appointment scheduled for next week. It may take them a while to evaluate her, and come up with some suggestions for helping her academically, so we will just try to be patient and see how things unfold. Her visit to the peds clinic was a little disappointing, her hemoglobin has dropped quite significantly in the past 5 days (11.7 to 9.9) so it looks like her recent improvements in that area had more to do with the excellent donor unit than any kidney improvements. Her kidney numbers were a bit worse again, and more interestingly, her glucose levels are really out of whack. She was at 54 today (normal is 70-110), even though she ate quite a bit this morning before the lab was drawn. They have been just borderline for the past few weeks, running 66-80 or so, so I have some questions in to the BMT docs, but if anyone has any experience in the area they'd like to share, my ears and mind are open. I was wondering if maybe the hypoglycemia might be contributing to her hand tremors, and if there might be any dietary adjustments necessary. We shall see.
On a bright note, Katy started her dance lessons again on Tuesday after a one year absence. I wish you all could have been there to see her adorable smiling face and her bubbly excitement! She is taking a combination ballet/tap class, and as I watched her through the glass tappin' and twirling away, I had to fight back the tears of joy. I'm sure the other mommies thought I was just some sappy, nutso Mom who cut her daughter's hair WAY too short, but I didn't care, and I was so excited for Katy that I didn't want to launch into my prepared "explanation" about her short hair/paleness. All that matters is that she was having a GREAT time, and doing something NORMAL. I silently wondered if the other mommies really appreciated "normal stuff", like dance class, school, and the magic that children create during the Christmas season. I know I do!

Dec 22nd, 1999 Day +229

We have been the lucky recipients of a very special early Christmas gift.....Katy's most recent CBC was nearly normal! Can you believe that? Just 7 months ago, Katy struggled to maintain a platelet count above 10k, and look at my baby now...274k! (Visualize a beaming Mom here.)

Her kidney functions have stabilized (they aren't great, but aren't getting worse), and thanks to the magic of Epogen, it looks as though we can avoid the downward spiral of her red cells. Knock on wood....and I can't believe I'm saying this.....but it is possible that Katy has had her last transfusion of any kind. Hallelujah.

This morning though, Katy woke up with a nasty cough and sore throat. I took her in to our local clinic, and the doc noted that she had sinus drainage running down the back of her throat, which was probably causing both the cough, and sore throat. She is now on antibiotics, and though she spent most of the day resting on the couch, she perked right up this evening....especially after she got to open an early Christmas gift from a friend. (Have you guys seen this "Shop With Me Barbie" play cash register? It's awesome! I plan on playing with it after Katy goes to bed.)

Anyway....the kicker is that since she doesn't have a fever, her body is dealing with this latest infection very well, and the amazing thing is that I lost the sense of panic and dread that accompanied every sniffle and sneeze this poor kid had. My kid has a cold. Big deal. I can't tell you how often we prayed for the day that Katy having a cold was just another tiny glitch in our otherwise normal and boring lives. It's the coolest Christmas gift we have ever gotten...and the one we will hold closest to our hearts forever. Only 5 more months until we can meet the glorious stranger who gave it to us.

Jan 1st 2000! Day +239

This time last year I wrote to all of you about our hopes for the year 2000. At the time, we were still awaiting news about possible donors for Katy, and planning a family vacation to Disneyworld in Florida. We were fully aware of the possibility that it might be our last family vacation with Katy. We went, had the time of our lives, and returned home to prepare and await the call that Katy's donor was ready, and her transplant would be scheduled.

On April 23rd, our beloved family and friends gathered at the airport to watch Katy and I depart for Houston, for what turned out to be the most difficult, yet most profound four months of our lives. I can't think of another year in the nearly 33 years I have spent on this earth when I have grown more...personally, emotionally and spiritually. On May 7th, the miracle we prayed for finally came. Everyone has just a few events in their life which they consider to be "defining" moments. One of my biggest came at 1:20 A.M., when I watched a woman hook up a syringe to an IV line and give my daughter new life, with just 50 cc's of fluid from a stranger. In an instant, we became forever bonded with a 38 year old man, who with a single, selfless act, gave us our daughter back.

This year, I witnessed birth and death, and saw both profound suffering and miracles. Many, many people touched our lives, and found a place in their hearts for our daughter, and we can never repay the generosity of our family, friends, and even total strangers. Our only hope is that we can try our best to continue the legacy by supporting other families of sick children.

Katy is heading in to the year 2000 CURED (did she really use the "C" word? Yes...I believe she did!) of the disease that nearly took her life on several occasions. Sure....she has a few minor problems as a result of the transplant, but she BEAT Aplastic Anemia, and for that we rejoice. At the same time, we will never forget those who are still fighting, and our precious angels who left this earth too soon. We will especially miss Kay-ci, Kevin, Wayne, Bilal, baby Jett, Nick, Adelaide, Ali, and our friend Dan, who is now heaven's Number One Nurse. Katy has a host of guardian angels to watch over her.

(Oh yeah.....did I mention that we had a GREAT Christmas, and that she hasn't had counts for nearly two weeks, and I'm not even the slightest bit anxious about it? THAT is a miracle!)

On New Year's Eve, blow your horns, drop balloons, throw your streamers and set off fireworks, heck....have a few sips of the bubbly. Kiss your loved ones and be thankful that you still have them with you. Find joy in simple things. Forgive someone who hurt you, and apologize to someone you hurt. But most of all...live each day with the same passion as a 6 year old girl, whose biggest problem in life right now is that she is sometimes confused for a boy. :o)

Jan 10th 2000 Day +249

We gave it a really good "college try" this weekend, trying desperately to manage Katy's increasing hypertension problem at home, but to no avail. Finally, on Sunday night, she had been given her maximum dose of both Nifedipine and Captopril, and her BP's were still WAY too high (140/100). She was admitted to Carle's Pediatric Intermediate Care Unit, and got both an IV for meds, and an arterial line so that her arterial pressures could be accurately measured. The arterial pressures were found to be consistent with the pressures we were getting on the cuff, and some were even quite a bit higher. The docs decided to start an IV med called Niprid, which I believe is a "vasodilator". Basically, it drops the pressures by dilating the arteries so that the blood has more room to move around. So far, it's working like a charm, and her pressures are stable at about 115/70 or so. MUCH better and safer levels to be at.
Katy's major problem during all of the commotion in inserting lines and sedating for the "A" line was that a nurse hooked up some oxygen and put her on a nasal cannula. This freaked Katy out, and she kept trying to tell them that she "wasn't dying like Kay-ci" and she didn't need any extra air. (Keep in mind that she was majorly "drunk" on Versed!) Bless her heart. I think that she was reminded of one of her last images of her beloved Kay-ci, all hooked up and with that "thingy" in her nose. I politely requested that they remove the O2, and just kept it on standby in case she REALLY needed it, as it was obviously doing more harm than good. They did. :o) Chalk up one for mama bear.
For now, until I see tomorrow's labs, I am just viewing this as another minor bump in the road. Katy is doing fine, except that with lines in both arms, she is practically immobile, and she finds this to be VERY annoying! Hopefully, we will come up with a more efficient game plan tomorrow for managing this nagging and potentially dangerous complication. I'll be in touch, you can be sure of that!

Jan 12th 2000 Day +251

Hey all....we've been sprung! Katy was finally weaned from the Nipride drip early this morning, as the Labatelol dose was increased and it started to kick in. She is also on Lasix, (a.k.a. MPM...Major Pee Medicine). She is still hypertensive....with her pressures running anywhere from 120/70 at the beginning of the day, to 135/95 towards the end, when it's time for meds again, but it's nothing like the 155-160 over 100-110 we got over the weekend, which couldn't be touched by any med we had on hand at home. (Nifed and Captopril). Besides.....her arterial line clotted off last night anyway, so I guess that was our sign it was time to get the heck out of there! She is currently in her room, having a conversation with her imaginary friend Casper. I think I just heard her say, "You HAVE to take those meds. If you don't....I'll have to hook you up to IV's. You won't get any EMLA either!" Ah....the richness of the imaginary play of chronically ill kids never ceases to amaze me. We are in the middle of 2 different 24 hour urine tests...one will end after the first pee pee tomorrow morning, and another will begin. She is also scheduled for another renal ultrasound early next week, to see if we can get to the bottom of this sudden BP increase. The Labetalol, while doing a great job of controlling her pressure, has some side effects that are a little unsettling. She gets nauseated after the morning dose, and seems somewhat more shaky and over stimulated. Her attention span is very short, and her teeth grinding is OUT OF CONTROL. Constant, hard, gnashing that makes the hair on the back of my neck stand up. She will NOT stop, no matter how often you remind her that she is grinding. I plan on buying some earplugs for her teacher, and making sure our dental insurance is paid up.
News flash.....Katy just informed me that she is packing her bags and running away to live at the hospital. She says, and I quote, "The nurses and doctors love me, and I love them. I can order food whenever I'm hungry and watch Cartoon Network. You and Dad can always come and visit me, and even sleep over. I will miss you." With that, and a quick peck on the cheek, she left my room and started packing. I need to run before she gets too far into the process of tearing through her dresser drawers. I guess we're lucky that she's comfy there....but geez! When I was a kid, I always wanted to run away with the carnival!

Feb 13th 2000 Day +283

I can't believe that it's been over a month since I updated this page....shame on me! Since my last entry, Katy has been back in the hospital once for her blood pressure, and needed IV antibiotics once for fever. For now, everything seems to have settled down, and things are on an even keel. Her BP's are controlled by LOTS of BP meds, but they ARE controlled, and that's what's important. We are heading off to Children's in Chicago on Tuesday of this week, to see the Hematologist and the Nephrologist. She will be having kidney scans, and her regular labs. Other than that, she is doing well, back in school and enjoying what is left of winter. I however, am REALLY looking forward to SPRING!!!

Mar. 16th 2000 Day +314

Katy continues to improve in energy, appearance and stamina. She recently had her 2nd post BMT haircut, and her lips and complexion have "pinked up" very nicely since adding the Procrit to her PPI (personal pharmaceutical intake) about 2 weeks ago. Her counts today were good, all except the kidney numbers which have started a downward spiral once again. I had suspected this, as her blood pressures have been up again this week, so though I wasn't surprised, I was a little disappointed. These fluctuations are to be expected for the next several months, and the only way to deal with that is to control her blood pressure and stay the course.
We are making preparations for our visit to Houston for her 1 year post BMT checkup. Katy is THRILLED, as she can't wait to see her favorite nurses and doctors, and roam the Ronald McDonald House with joyous abandon. Her doctors did inform me that they plan to check her marrow (I was hoping to avoid that), and that her BMB & A will be done under sedation on the 3rd of May. We expect and demand nothing less that 100% donor cells! I think it's pretty obvious that with a platelet count of 295k, her donors cells are the only little puppies in there, but they have to be sure. They also plan some more kidney function stuff. We'll be there from May 1st to the 6th, and while we are there, we plan to visit Kay-ci's grave. Katy and I have talked about it, and she told me that she will bring flowers for Kay-ci's grave, and a balloon to let go of and send to heaven for her. Smart kid.
For those of you that have asked about our insurance issue, it no longer exists. Katy is COBRA'ed on our old policy, and the rest of us have the HMO which is adequate for us healthy folks. My vision is that in a year, Katy will be well enough to join the ranks of the "well".
On a final note, we've also been told that we will be given the name of Katy's donor while we are in Houston. What a rush! I'm not yet sure how I'll deal with it. Katy tells me that when she meets "Jack" that she's "gonna hug 'em & kiss 'em and give him great big loves, and say Thank You a million, billion, zillion times." Probably not at all unlike what I'll do. I sure hope this guy has a sense of humor. I also hope that he is prepared to handle the admiration of the hundreds of people who have supported our family through this. KATY'S DONOR for President 2000!

April 28th, 2000 Day +356

One year ago today, Katy and I boarded a plane for Houston, Texas. We didn't know it at the time, but Katy's BMT journey would be one of the scariest yet miraculous events in our lives. I can remember it as if it were yesterday....the crowd of friends and family at the airport, the tears and prayers, the joy of hope for a cure, and the fear that we might fall short of achieving it. I'm proud to say, that despite many hurdles and setbacks, Katy is getting better and better each day, and is now CURED of Aplastic Anemia. She is a happy, bubbly and precocious 6 year old who lives life to the fullest each day.

In about a week, we will be given the opportunity to contact the man who gave Katy a second chance at life...her bone marrow donor. We get more excited with each passing day, and are looking forward to a party on May 7th, which is Katy's 1 year BMT anniversary. Katy is a daily source of hope and inspiration for us all.

May 7th, 2000 Day +365

One year ago, I paced a sterile hospital room, overcome with fear, anxiety and of course, HOPE. Then, in that tiny room on the BMTU at Texas Children's Hospital, Katy was reborn. She slept peacefully as her new life flowed through IV tubing and into her little body, and over the next few weeks, found it's way home. It was a miracle, and continues to be. Happy re-birthday Katy!

We had a wonderful day today. Our friends Linda and Don hosted a small party at their home to honor Katy's 1st Marrow Birthday, and it was very nice. Katy thoroughly enjoyed the attention and seemed to finally grasp the concept of her BMT. She got a few small gifts, and gave gifts to her brother and sister for being such good siblings throughout her illness. Everyone had a great time, and for the first time in a long time, I felt just a tiny bit of closure. That light at the end of the tunnel that was just a flicker one year ago, is now shining brightly!

Now....for a quick summary of our Texas jaunt. Katy had a positively wonderful time, even smiling before and after her bone marrow aspiration (thanks to propofal...a.k.a. milk of amnesia) and was elated to reconnect with her beloved docs, nurses and support staff. We were kept really busy with follow up tests on her heart, lungs, kidneys and other systems. The results of most of those tests are not yet in....but the preliminary findings are that Katy is recovering beautifully, with only a few minor problems. She has not grown since her BMT which could mean damage to her adrenal gland, and may require growth hormone injections. We'll just keep a close eye on that. Also, her thyroid function isn't normal, so she may be started on synthetic thyroid hormones, no big deal at all. The audiologist said that a few of her hearing tests were not quite normal, so we need to keep close tabs and do frequent hearing tests to make sure that any hearing loss is addressed. (Loads of an ototoxic antibiotic called Vancomycin are the likely culprit...but hey, it's a fair trade!) Her kidney functions, though not yet normal are improving and Katy and I even got to look through a microscope at her 1 year old marrow. It was really cool! Dr. Heslop patiently explained to us what each cell looked like, and said that for the most part, her marrow looked NORMAL. (Or was that HIS marrow?.....well....let's just say it's on permanent loan!) We hope to hear later this week that her marrow is 100% donor, and this will mean that relapse of her original disease is very, very unlikely.

Also....we pray that information about Katy's donor is forthcoming next week. Since her 1 year anniversary fell on a Sunday, there was no way to get the information to us, but you can bet that Detective Mary will be hot on the trail first thing in the morning.

We did get to meet with our beloved Angel Kay-ci's Grandma while in Houston. She drove down to the RMH, and we got to catch up, chat and even cry together a little, as we reminisced about our many long days and weeks on the BMTU with the girls. To say that the family misses Kay-ci terribly is an understatement, however Grandma proudly showed me her brag book, full of pictures of Kay-ci's new baby brother Shiloh. HE IS ADORABLE...and has Kay-ci's eyes and a dimple in the exact place on his right cheek that Kay-ci had. Grandma and I joked that Kay-ci kissed him there. At one point, Katy crawled up into Grandma's lap and said..."Do you miss Kay-ci? 'Cause I do....really bad." That's when the tears started flowing...but in a strange way, they felt good. Of course, we'll always stay in touch with them.

Our last night in Houston, Katy and I were treated to free tickets to Astroworld, and we had a really great time together. Katy ran and rode, ate and laughed like any other 6 year old. Looking at her, you'd never know the hell she's been through the past three years. I remember that she was diagnosed just after her 4th birthday, and immediately told us that she was "gonna be three again....because it was better to be three and not sick." Today, I think she'd say it's great to be six, and even better to be seven. It's exactly what we've always wanted for her. Sure....she's lost a lot, but she's grown in ways that most 6 year olds can't even imagine, and she's come out with guns blazing!

We can never thank our friends, family, church, community and our wonderful extended "cyber" family enough for the fabulous and devoted support you've given us since Katy's diagnosis. Please know that we will never forget the acts of kindness and the many gestures of love, support and prayers that have gone out for our family over the last three years. We have truly been blessed.

May 21st, 2000

First....let me "esplain." No....it is too much. Let me sum up. (<---a classic line from The Princess Bride). David and I noticed bruising on Katy's legs about a week ago. We talked about it, decided since she'd had a normal CBC just a week prior that it was just Katy being active, and we filed it away in the backs of our minds. Then, on the plane to CA on Friday evening, Katy had two nosebleeds of short duration. A small red flag, but then "plane" air is always dry, so I sorta brushed it off. Then, I noticed the petechiae on her neck as she laid in my mom's lap during landing. I was immediately struck with sheer terror. We decided that since our plan was to head back to IL on Sunday night, we'd just do our best to get through the wedding and reception (didn't want to alarm the bride or her family...tried to keep it quiet). and then go immediately to the ER at Children's in Chicago after we left O'Hare. It was a nice dream while it lasted. Katy started bleeding....strike that...gushing blood from her nose at 11 a.m. on Saturday and there was no stopping it. We tried EVERYTHING, and gave up in desperation at 2:30....and took her to the nearest ER, where she wailed and sobbed that she "missed the wedding" and "she was SUPPOSED to be THE flower girl" and "some other little girl got to carry her basket and wear her crown of flowers." (The groom's niece was sweet enough to step in at the last minute.) It really broke Katy's heart.

At the ER in St. Helena (which I can't recommend highly enough....LOVELY people), Katy continued to bleed until they put her on oxygen, which dried up enough blood to clot it. However, then it began to run down the back of her throat and she started to vomit it. NOT pretty. They ran a CBC, discovered that her platelets were 14k and immediately ordered an ambulance to transport her to Children's Hospital in Oakland. (Another HIGHLY recommended facility....the physical plant is okay, but the staff ROCKS!! They are SO sweet and accommodating.) The sweet ambulance guys, Josh and Bruce, played with Katy throughout the 2 hour ride, and we laughed about this being the "most expensive tour of Napa Valley" possible. They said that they couldn't offer wine tasting, but would gladly pop open a bag of saline for me to taste. I passed. :o) Once in the ER at Oakland...her platelets were 7k and Hgb had dropped to 6.5. NOT good. They started platelets, fluids, and admitted her to their Hem/Onc floor. She continued to bleed and it really picked up Sunday morning to the point that it was very worrisome. They tried three times to pack her nose, and she would bleed right through the packing. Finally, they came up with a strange, but interesting concoction to try....they soaked the packing in a solution of Thrombin, Amicar and Cocaine! That's right! I said C-O-C-A-I-N-E! Freaked me out, but they said it worked, so we went with it. And they were right. After two tries at that...her vessels finally constricted and she is stable and not bleeding. I never would have believed it if I hadn't lived it. My baby is snorting coke at age six. This will be an interesting story for cocktail parties when she's older. :o)

She has since gotten a second unit of platelets, will get a third tonight, as well as a unit of packed red cells. She is as white as a ghost. Tomorrow, they will check her marrow (a BMA & B) and while she is under the influence of Propofal, they will find a spot to insert a line. Her veins are scarred from repeated access and weak from low Hgb, so she's been a VERY difficult stick, and has had about a dozen pokes in the last two days. The IV she has right now is very tenuous, flushing, but not drawing back. After all this is accomplished, we are hoping to secure an air ambulance to Houston, where they are anxious to have her, but not before she is stable enough to travel.

We don't care to speculate on the cause of this VERY big speed bump in the road. There are many possibilities, and we pray that it's something easy enough to treat, and we ask for your prayers in that area too. And as Katy would say..."This is just TOOO much. I hate this." (Sunny disposition WAY out the window.)

May 23rd, 2000

This is going to be short and sweet, because I am exhausted. We departed Children's Hospital Oakland at 5:45 a.m. and caught our flight at 7:45 a.m. Katy almost threw a major monkey wrench in the departure plans, as we had difficulty getting her BP down (it was 155/120). I administered a double dose of Lasix, and three potties later it was down enough so that we were comfortable.

The plane left Oakland, and made stops in both San Diego (we waved at you Edy, Keith and Daniel) and Phoenix, before finally delivering us to Houston at 3:45 p.m. local time. The Southwest bird was hardly the "party jet" I described it to be just two weeks ago....this time, it was a trip we dreaded.

We arrived at the RMH and are checked in safely. Katy is stable and even enjoying things a little bit. She will have surgery to have a central line placed tomorrow morning very early, and then another BMA and biopsy. I will try to get online tomorrow night and share with you all the information as it comes to me. I know how invested you all are in our little girl, and I understand how worried you must be. Trust me, we are on the same page.

Thanks so much for all the wonderful e-mails of support and prayers for Katy, but please try to understand that hard as I try, I might not be able to respond to each one personally. We do appreciate all of the wonderful words of encouragement...they are sometimes the only thing that helps me get through the day! I snapped a picture of Katy in her hospital bed at Children's of Oakland, her nose packed but still bleeding, and believe it or not, the kid is still smiling! She's just amazing. To view it, go to the "Current Status" link on Katy's homepage. Warning....it's not for the faint of heart.

June 11th and 12th 2000

Yesterday afternoon, the HVAC unit at the RMH suddenly stopped working, which was NOT a good thing. Houston is steamy hot, and it only took about an hour before the house became quite uncomfortable. Katy started to "wilt," but I figured it was just the lack of A/C. She laid down on a couch in the great room, and I took that opportunity to sit outside in the breeze and partake in a Corona with a wedge of lime. Hit the spot perfectly! As I relaxed and talked with some other parents, the generator behind the house exploded and caught fire. Scared the bejeezus out of everyone! We were quite worried about the HVAC man who was working on the unit at the time, but he turned up uninjured. The house went dark, and the emergency generator kicked on but with very limited output. The only things running were the fridges, and a few lights. The kids who felt well thought it was a great adventure...running around playing flashlight tag and hide and seek. When Katy didn't join in, I knew something was amiss.
I checked her forehead, and she felt warm...so off to the TCH emergency room we went, while the rest of the families at the RMH were sent to the cooler and safer Residence Inn for the evening. By the time we were in an exam room and they checked her vitals, she had a temp of 104. She started throwing up and was generally miserable with the shakes and complaining of a back ache and headache. THAT tripped my worry switch!
They CAT scanned her head and it looked fine, so they started IV antibiotics and took blood cultures, which turned up a gram positive cocci in both lumen of her central line. So....Hi Ho, Hi Ho, it's up to the floor we go for a few days of IV antibiotics, and yanking the line if she doesn't improve. She still has a high fever as of this P.M., so it looks as if a Thursday departure to Illinois is unlikely. I'm beginning to wonder if we'll ever get home! First and foremost though...we need to get Katy well, and I know that. Another crummy side effect of high fever is lowered platelets, and she doesn't have many to spare...so we'll keep a close eye on that. Ugh.

June 12th, 2000
She continued with her high fevers all day yesterday, and then last evening, after a quick chest x-ray, the surgeon called to let me know that her central line had shifted too much, and was only in the vein about an inch. (Not a "good thing" Martha Stewart.) He warned that if we continued to use it, and it slipped further, we'd end up pumping meds and fluids into her chest cavity...again, not good. So...at 2 a.m. they decided that she needs a peripheral IV to get fluids and her antibiotics. SIX....yes, I said SIX freaking pokes later, they got a very tenuous IV. Katy was SOOOOOO good. Despite her fever and exhaustion, she didn't shed a single tear and even thanked the ER nurse who was finally successful when he was through. That's my girl.
Unfortunately, that IV wasn't to last long...and it perforated in the early morning hours, causing her little arm to swell up like a sausage. The poor thing winced in pain as they removed that one, and it was decided to let the home health gals give a more permanent Mid-Line a shot, which they did beautifully, and again, without Katy shedding a tear at about noon. Phew...it was such a relief to have access! Our joy was short-lived though, when her counts came back and her platelets were only 14k. MAJOR....major bummer. They ordered her a unit of platelets, just so it would be safe to remove her now useless Central Line, which they did at 7. By this time, her fever had abated, and she is feeling quite a bit better. She's now getting the IVIG, and her antibiotics through her Mid-Line and is perking right up. I am going to BEG and gravel to try and get us out of there be tomorrow, as I can continue the IV antibiotics on my own at the RMH. She'll probably be getting a new form of central venous access in the next couple of days, but her veins are pretty spent, so it'll take some creative thinking on the docs part.
At this time, the mechanisms causing her platelet destruction (and now suspected RBC destruction, as her Hgb has dropped to 8) are still unknown, and the docs are shooting in the dark to try and figure out what the problem is. We are tired, frustrated and just plain fed up, but Katy's spirit keeps us going.

July 17th, 2000

OH MY GOSH! I apologize for not updating this journal sooner, but things got pretty hairy in Houston and I kinda let my journaling "slip". Not a good thing. At any rate...we are home now, having been sent home from Houston after Katy's counts were finally stabilized by a 3 day round of high dose steroids. (Hell on earth.) She was eventually diagnosed with Evan's Syndrome, which is an autoimmune disorder that involved destruction of 2 of the three cell lines by auto-antibodies. At this time, it's unclear if it will be a one-time incident, or a chronic, recurring problem for Katy. In fact, someone asked me yesterday if I was "finally seeing a light at the end of the tunnel?" I replied, "No...but I've decided to create my own light, settle in and enjoy the tunnel!"

Katy has improved by leaps and bounds over the last two weeks, and is back to being her normal, active self. The only remaining issue at this point to be addressed is her high ferritin levels, which stands at 4500. This is a very high number, and all the excess iron that she has recieved is being stored in the tissues of her body, causing damage to her heart, kidneys and liver. The problem is that this high number does not correlate to the number of transfusions she has had, but is about 3x higher than it should be. The cause for this is now under investigation, as well as possible treatment options.

For now, Katy is looking forward to school in the fall and enjoying her first "real" summer since she was 3 years old. She's doing all of the "normal" things that kids her age do, like swimming, bike riding, and best of all.....getting dirty!

September 11th, 2000

Hey all....seems like forever since I sent a Katy Update, and just this past week, I have gotten a few "hey Mary...did you drop off the face of the earth?" e-mails, so here goes. Sorry it has taken me so very long.
Katy is doing well and progressing nicely in school. Each day I observe her, I am further convinced that we made the right decision to hold her back this school year. Academically, she is right on target for a first grader, but three years on treatment has delayed her a bit socially and emotionally. She "fits right in" with the 6 year old first graders, even though she is 7, and darn proud of it. Anyway....I think in the long run, 2 years of first grade will prove to be very beneficial to her.
Last weekend, Katy finally lost her first tooth. Her "bestest friend" Kristen had lost a top/front tooth and Katy envied her for weeks. She kept running up to David and I saying, "See? I have a looth tooth!" (as she attempted to wiggle it.) It was just MAYBE a teeny bit loose, but not by any means ready to come out, when Katy decided to tie a 4 foot long piece of string to it. She had just completed the task was on her way to the kitchen to shock me with her ingenuity when the trailing string caught on a piece of furniture, tightened around the tooth and popped it right out. She arrived in the kitchen shocked and bleeding, but laughing her bottom off with joy that she "was gonna get some cash" from the tooth fairy, with the extra bonus of now looking just like her friend Kristen. I couldn't believe it! Any other kid would be bawling their eyes out....not Katy. Not ONE tear, even though she had managed to yank a tooth with roots that were nearly as long as the tooth itself. I am still dumbfounded. (Not to mention that I cried for 1/2 an hour in mourning for her adorable little smile which will never be the same.) As an aside, Kristen lost her other top/front tooth at school on Friday, and I have HIDDEN the string. :o)
On the health front, Katy's kidneys are acting up again, both an elevated BUN and Creatinine have dropped her Hgb so that she needs 3x weekly Epogen injections to stabilize her red count. We were told that it's possible that she might have permanent kidney damage, and this on again/off again relationship with Epogen could be a lifelong "thing". Whatever. No big deal really. Unless of course, she has some other kind of kidney trouble in the future...but we'll pass that bridge when we slam into it. (We never cross bridges lightly!) For now, her energy is fine, and she appears for all intents and purposes to be a "normal" little girl.
I am truly enjoying my new position as a Special Education Teacher's Aide at my children's school. Some of the kids I work with can be really challenging, but it just makes their accomplishments all that more sweet. I have spent quite a bit of time researching behavioral/learning disorders this weekend, and will continue to seek out new methods of helping my little guys and gals be successful in school. It really is a rewarding job, and I may consider some secondary education in the area so that I can eventually make it profitable. :o)
I have also volunteered to coach Katy's soccer team this season, but spent most of the game last week consoling a sobbing Katy Rose. When she asked to play, I don't think she had any idea how physically draining the game of soccer can be. Even on a small "Pee Wee" field, Katy just doesn't have the same stamina as the other kids her age, and can't keep up running between the goals. After about two minutes last Saturday, I had to rush onto the field and scoop up a sobbing Katy who had collapsed to the turf crying "I CAN'T DO THIS!!", over and over again. My heart broke for her. I tried to gently remind her that she was still getting better, and she could still play for short spurts, going in and then coming out when she got tired. This was NOT good enough for her. Finally, we put her on defense in front of the goalie, so she wouldn't have too much running to do, and I could hear her muttering to herself "I CAN do this....I CAN." However, the very next second, the ball smacked her in the face and she gave up altogether....leaving the field in tears and sitting with some of the other parents. Poor kiddo. Maybe soccer just isn't her "thing". We'll see.....we'll try to give it a few more games.
Well....I'm off to round up some dinner. The kiddies are currently in the front room dancing and singing to the Joseph and the Amazing Technicolor Dreamcoat CD. They LOVE that one. Take care everyone!

October 26th, 2000

Hello all! First of all...let me apologize for taking so long to send out a Katy Update. Working full time outside my home is pretty demanding, (something I've never done before) but I really like it. Anyway...the word "prioritize" has been given a new meaning at the Hubbell House!
Katy is doing pretty well. She is still having minor problems related to transplant, (sluggish kidneys, hand tremors, etc.) but is back in the swing of things at school, dance class and Brownies. She had counts done today (see her current status) and aside from being a little anemic, her counts were great and every single day I can see her making gains and taking steps towards being a NORMAL little girl. (To the extent that Katy was ever normal!)

I haven't yet reached the point that I can get through even one 24 hour period without thinking about our 3 year ordeal or wondering about her future. Maybe that day will never come...but that's okay with me. Most days,I remember something positive that Katy's illness brought us instead of the tough times. Katy has chosen to be a Doctor for Halloween....big surprise! I can just see her trick-or-treating and asking people for their insurance cards instead of candy! (It would be just like her to do that.) On the insurance front for Katy however...we are quickly reaching "crunch time" (Dec. 1) when we have to decide if we will add Katy to our family health policy (not a great one) or continue to pay for her COBRA policy. We still haven't made that decision, and will wait for her pending labs before we decide. I cringe at the thought of switching doctors, especially considering that of the pediatricians I've spoken to on our family plan, NONE feel confident enough to handle a pediatric post BMT patient with Katy's history. (They have as much told me so by telling me "She'd be better off with "so-and-so".) Sad...but true. I don't think anyone would actually REFUSE to treat her, but I can't, in good conscience sign up for the team when the rest of the players aren't willing to show up for the game!

Good news about Katy's donor Ernie. He married his long time sweetheart Bridget earlier this month, and is honeymooning in Italy this week and next. We still dream of meeting him someday, but the Virginia is a little far for a road trip. I have confidence that we will meet him someday....I'd love to surprise him at work. You know....let his bosses know....get his company PR department involved...treat him to a "King for a Day" kinda thing! (Maybe this is a job for Oprah.) :o) There I go dreaming again....but it's about good things these days...not the smell of laundry soap! Take Care all, and for those of you who celebrate it, Happy Halloween!

Feb 20, 2001

Oh my goodness!!! It has been FOREVER since I updated this section of Katy's site, and to our regular visitors, I apologize profusely! Katy is doing very well on the health front. He counts are stable and she is in first grade full time. She's having a bit of trouble adjusting to the routine of her first grade classroom, but we're working on it.

We recieved a COOL phone call from the National Marrow Donor Program last week, and learned that Katy will get to meet her miracle marrow donor (Ernie) on NBC's Today Show! She will be the last in a series about Bone Marrow Transplants, and though I'm not sure of the logistics just yet, we have been assured that it WILL happen and Katy and Ernie will finally get to meet! We are VERY excited! We have been told that the segment should air around mid-April and if possible, we will upload it to the site. Take Care everyone!

June 12th, 2001

Okay...things are starting to settle down a bit after our "whirlwind" weekend, and I am at least partially able to collect my thoughts enough to share them with you all. (Which I have been eager to do!) First of all....you should know that I have had a huge smile plastered to my face since about 12:15 p.m. on Saturday, June 9th, which is the moment Katy's donor Ernie and his wife Bridget stepped out of a gold (perfect) car and into our lives forever.

Earlier that morning, the Today show production crew met us at the home of some of our friends who live nearby the airport. Katy was so excited that she kept letting out little squeals all morning. I had made Katy a storybook about her diagnosis and treatment, and we read through it until we got to the "To Be Continued" part, where I will add the pictures of she and Ernie. Then..the clock chimed 11 a.m. and the phone rang. Ernie had landed safely at the airport just a few miles from where we were! (There was also a camera crew following him.) The meeting was arranged at a park, so we all hopped in the van and off we went.

Once we arrived, the two crews got together and had a "pow wow" about how to set up the lighting and sound, etc. The producer held Ernie in a car about 4 blocks away and out of view until everything was ready. We sat in the van and Katy could hardly stand it! Her excitement was bubbling over, and there was no way she could sit still. She kept saying, "It's being FOREVER!"

I have a new appreciation for TV journalists! I had no idea how much work and planning was needed just to film 30 seconds or so. It seemed like it took forever to set things up just right for the cameras and sound. Katy and Ernie were both "wired", so that should be interesting! When the time came, we were instructed to sit at a picnic table, and they drove Ernie up. When he stepped out of the car, I swear....my heart stopped for a minute. Katy raced up to him calling his name, "Eeeernieeee" and David and I tried to stay back. He had a huge stuffed Tigger doll for her, and his wife Bridget was carrying gift bags for Sarah and Seth. They hugged of course...and the love affair began. Katy acted as if she had known Ernie her whole life. She "allowed" her father and I to hug he and his wife, but then quickly grabbed his hand and took him over to the playground equipment, where she introduced him to people as "her donor". (Naturally, they had no idea what that meant!)

(This is where you need to get out your box of Kleenex, because you will not believe your eyes/ears.)

If you've been following the Katy Updates over the years, you know what a special significance pennies have to us. We found one on the ground outside the hospital on the day that Katy was admitted for her BMT, and then again just outside the BMT Unit. I quickly embraced that as our sign from God that he was in control and would have his hand in Katy's outcome. Throughout her hospital stay and post BMT experience, I found pennies in THE most unlikely places. It went beyond coincidence. As Katy got better, I found them more rarely, and over the last year I really hadn't found any at all. But then.....

As Katy and Ernie were playing together on the playground, she ran over to a high slide and said "Catch me Ernie!" He positioned himself at the bottom of the slide and she came flying down. He scooped her up and they went on their way. Then, my husband David noticed a glint on the bottom of the slide. He went over...and there it was...a shiny, heads up penny, laying just exactly in the spot where Katy had just been sitting. He picked it up and showed it to me, and in a shaky voice that my husband RARELY has, he said "Look what I just found." Our eyes locked for a moment, and we hugged and cried. So...as Ernie had done once before, he "caught" our precious Katy as she was falling, and saved her before she hit the ground, and our higher power was there to remind us that he had orchestrated the whole thing. It was all very humbling.

After that, we had a little bit of private time to have lunch at Katy's favorite restaurant, Biaggi's, and then we all went back to the hotel to get ready for the big dance recital. Ernie and his wife Bridget were in attendance at the recital, as was the camera crew. At the beginning of the recital, I walked out on stage with Katy and David and introduced Ernie to the whole crowd in attendance. (He is so humble...the sweetheart did not want to stand up, but I made him!) He got a HUGE round of applause. The recital was LONG (which made it tough for the camera crew because they were really only there to film Katy...) but it was fun, and after it was over, we all collapsed at the hotel.

On Sunday, we hosted a little reception at the home of our friends Linda and Don where some people from our church and family and friends could acquaint themselves with Ernie. The local NBC affiliate showed up to film a segment. I found it ironic that the story about Ernie saving Katy's life was run right after the Timothy McVeigh Execution story on our local news. Now....which one do YOU think deserves more attention??? (clunck....stepping off the soapbox)

We went out to eat together after the reception, and then Ernie and Bridget came over to the hotel to watch the kids swim for a bit before I took them to the airport. I have to tell you....I was truly very sorry to put those two precious people on a plane and send them home. Ernie very clearly adores Katy and is SO good with her. He is shy and unassuming, but not afraid to show how he feels about the bond that has been created between the two of them. He carried her around, held her hand and basically treated her as if she were a part of his family. They were seen snuggling several times throughout the weekend. His wife Bridget was sweet beyond words, and it's easy to see how she and Ernie ended up together. As far as we are concerned, they both walk on water, and we found ourselves really wishing that we lived closer together. We are praying that someday, we can have some time together that is less "scripted" and not under the scrutiny of TV cameras.

It was truly a wonderful, humbling and touching experience, and one that we will never forget. Meeting Ernie and Bridget was necessary to close a chapter on a very difficult time in our lives, and open a new one that includes two very special new family members. It could not have gone any better.

We do not know air dates for the Today Show yet. The producer has said that she "estimates" it to be the first week in July, but is not sure yet. Remember, there will be a whole series of BMT stories airing that week, and Katy's will likely be last. I PROMISE.....I will post air dates as soon as I know them. It will be a fitting ending to share this experience with all of you, the people who supported us during the hardest experience of our lives.

Click here for pictures of my first meeting with Ernie!

December 29th, 2001

As a New Year draws near, I thought I'd sit down for a moment and send out one last Katy/Family Update for the year 2001.

We are all breathing a collective sigh of relief that Katy has made it through a full calendar year without any major medical issues or hospitalizations of any kind! Phew! Her health seems very stable, her blood counts are excellent (not perfect, but very good) and she appears to have full immune reconstitution. She has finished her revaccination schedule and is doing very well. Strangely, this year seems to be a little rockier as far as colds and coughs go. She's had coughing/sinusitis for a few weeks now that doesn't seem to want to let go, but then again, so have I, so no big deal really. We have altered the saying "no harm, no foul" to "no fever, no foul", and she hasn't had a single febrile illness for a WHOLE year. Unbelievable, really. Miraculous.

School continues to be an issue as we deal with the late effects of the chemo and radiation. We are trying out varying doses of Ritalin to see if it will help her to concentrate and learn without constant redirection. So far, no luck, but we'll keep trying. Her Neurologist and her teachers have been wonderful, and we're hopeful that we'll find a solution soon.

Christmas was very nice, and as always, Santa was good to Katy and her brother Seth and sister Sarah. Katy's hands down, favorite gift was a REAL adding machine with paper tape. She simply loves the thing! She used up all of the roll of tape that came with the machine already, so I suppose a trip to Office Max is in my very near future. Maybe she'll grow up to be a CPA, though she still insists that Nursing is her career goal. Of course, we truly feel that our biggest gift this year is Katy's continued good health, given to us by her marrow donor Ernie. The addition of he and his wife Bridget to our "family" made 2001 very special to us.

David (Katy's dad) reached his six-month seizure-free date on the 18th of August and is now med-free and driving again. He is STILL a nonsmoker (we are all very proud) and despite some minor episodes of lightheadedness, he is doing really well and almost back to normal. (Those of you who know David will belly laugh at the idea of the words "David" and "normal" being used in the same sentence.)

Just a little bit of shaky news to wrap up our year. In early November, I noticed a lump in my neck (in the vicinity of my thyroid gland) that was tender and palpable, despite my already being on thyroid replacement hormone. An ultrasound showed the lump to be a "solid mass" (not a cyst) and I was sent for biopsy. I'd had a thyroid biopsy in 1994, but it turned out to be a cyst and I was simply placed on Levoxyl and it disappeared. This time, it's different. Despite 7 pokes in my neck, the doctor was unable to get a sample that was good enough to satisfy the pathologists. (I was pretty unsatisfied by the 5th poke too....I thought that thing was going to come out the back side of my neck and into the pillow!)

At any rate, I will need another, ultrasound guided biopsy with a bigger needle (yikes!) in a couple of weeks. I figure if Katy can have an unsedated, no-pain-control bone marrow biopsy, I can handle this! I am having heart palpitations and some big time headaches, which is pretty uncharacteristic of me...I'm normally as healthy as a horse. Hopefully, it will turn out to be "nothing". But, if it's "something", we'll cross that bridge when we come to it, just as we have crossed the many other bridges we have encountered...with our family and friends behind us and supported by the love and prayers from all of you.

I'll be sure to keep you all posted. Have a wonderful and prosperous 2002! Oh yes...and remember to save a life this holiday season. Donate Blood!

February 2, 2005

Can it already be 2005?!? We are approaching the 6th anniversary of Katelyn's successful bone marrow transplant. SIX years. Somedays it seems like a lifetime ago, and on other days, it seems so fresh.

Katelyn's general health has been great. She is growing well on her nightly hormone injections and no progression of her cataracts means we will delay surgery until it is truly necessary. She is still struggling in school, but seems happy and content with her life most days.

Last month, the issue which I have been delaying dealing with finally reared it's head...Katy's infertility. Recent bloodwork has revealed that Katy has experienced total ovarian failure due to her radiation and chemotherapy. This has rendered her sterile and unable to have her own biological children. For those of you who know Katy, you will understand how doubly devastating this is to her. Katy has always LOVED babies and younger children. As soon as she was old enough to understand and reply to "What do you want to be when you grow up?", she was saying "Just a mommy. That's all I want."

Understandably, Katy was not mentally or emotionally mature enough to understand her sterility, so I had been delaying discussing it with her until the time felt "right". It never really felt "right", so I just figured I would wait for a proper opportunity to arise, which it did recently.

Katy started a health unit in 5th grade that discussed human reproduction. This meant that she had a lot of questions and one day, she came up and sat next to me on the couch. "Mom, when I have babies someday, and when they come out my you-know-where (she says giggling)...will you come to the hospital to help me?" I tensed up inside and the tears came rolling out of my eyes and down my cheeks. Katy was thoroughly confused. I knew this was the time.

I took a deep breath and told her about her inability to have children. I told her that her eggs were damaged from the radiation and she didn't have any to mix with the "boy ingredient" to make a baby. And then I died inside (again) as I watched my daughter's face mirror her realization that she may never be the only thing she ever really wanted to be when she grows up. Slowly, her head dropped and quiet sobbing began, and all I could do was hold her. Her dream was gone. We cried together for a good 10 minutes and I whispered how sorry I was to her and that her daddy and I chose to save her life and think about her eggs later. She sat quietly and I watched the wheels turning in her head. I explained to her that she could be a mommy in other ways, by adopting a baby or by using eggs from a donor. She said, "But it won't really be MY baby, will it?" ( I think she was referring to "biology".) I told her no, it would not.

More silence, but the tears stopped flowing. She looked me straight in the eyes and said, "Mom...thank you for choosing to save my life. We can figure out the mommy part together later, okay?" I replied, "Yes, we can. And we will find special doctors who will do their best for you, just like we always do."

With that, she excused herself from the living room and disappeared into her own room for about two hours. I never heard her cry, but I also didn't hear the television, radio or video games. It was very quiet in there. Later, I found she had fallen asleep, but noticed that every doll in her room had been very meticulously undressed and redressed, hair combed and placed carefully in her bed. More tears for me!

Since then, Katy hasn't really brought it up again. It's like she is taking her time to work through the emotions. Either that, or as is usual with Katy, no further discussion is necessary. Black is black and white is white. It's done, it can't be changed, and she won't dwell on it. At least that's what I'm hoping for now!

Well, I must run and get back to work. May God Bless all of you who continue to check in on my little Katybug and keep her in your prayers. Oh and yes...Katy has become a huge Illini Basketball fan of late....number one in the country baby!! We are looking desperately for some tickets to the Feb 23rd home game against the Northwestern Wildcats. PLEASE email me if any of you have connections or an idea of where we could get some reasonably priced seats! New photos are coming soon!

Read My BMT Journal! Last entry on 08/19/99

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