History

Monday, November 6, 2006 8:07 PM CST

Caitlin has today turned 15. She stands before us, both happy and well, and we continue to be humbled with sheer amazement of and at her life. Should you have asked several years ago if Dan and I had thought her reaching this fine age of 15 were possible, we would have in all honesty whispered "No". My Mom tonight has even confessed to feeling that Caitlin would have been gone before the age of 10. My sister also quietly said she surely felt Caitlin's 12th birthday was to be her last. This child has traveled down so many long roads... and has been at risk for so many years; not even the odds are in her favor. Yet today we are blessed to be celebrating a wonderful occasion --- and we are privileged to be joyous at the passage of time! There will never be a day in which we don't realize and are appreciative for all that we have been given. What a wonderful day today is!

Happy Birthday Caitlin! And many, many, many more!!!

Love you always,

Mom & Dad

XOXO

Monday, September 25, 2006 8:21 PM CDT

The days of Summer have quickly passed in what seemed to be the mere blink of an eye... and gratefully September has come and will soon go. Given the fact that Caitlin's two diagnoses with Cancer both came in September, we are always grateful when this month passes without fanfare.

As you probably know, we've recently returned from yet another Mayo visit. By far the biggest surprise is the fact that Caitlin has grown over two inches since she was last since there in May! Yes, that's right --- incredibly, Caitlin now stands nearly 53 inches tall (and this happened right before our very own eyes --- and without us even realizing it)! She also now weighs 61 pounds! Although this is still very small for a child nearly 15 years in age and she continues "Not to make the chart on height and weight", she has in fact made tremendous progress! Additionally, her recent bone age study revealed that she has great potential for future growth! Given Caitlin's current depression over her small stature, we consider this growth spurt and news of potential future growth as a gift from above --- and a gift perfectly timed!!!

Yet another surprise was Caitlin’s recent diagnosis with ‘Gonadal/Ovarian Failure‘, a condition characterized by lack of ovarian estrogen production and infertility (we truly shouldn't have been surprised to hear that Caitlin has been classified in such a way as we had been forewarned). The known causes of this type condition are chromosomal defects (of which Caitlin has) and exposure to radiation and certain chemotherapy drugs (of which Caitlin has most assuredly had). As previously mentioned, having this type condition at such a young age may prevent Caitlin from achieving and maintaining adequate bone density... and she is at increased risk for Osteoporosis and fractures. For whatever this difference of opinion is worth, Caitlin's physicians believe that her condition is due to treatment while Dan and I feel in our hearts it has to be due to her Primary Immune Deficiency Disease and her chromosome translocations (after all, we've known many children who have undergone treatment similar to Caitlin's and yet their growth has not been stunted). We do know that her doctors continue to do all that they can for our daughter and although we’ve always hoped and prayed for miracles (and have been given many), we do realize and appreciate the limitations of science. With the hopes for additional growth, Caitlin’s estrogen has been increased from 10 micrograms to 20 micrograms daily.

Caitlin’s recent depression was additionally discussed and despite the fact that it was determined this should be closely monitored, her doctors did not feel it warranted intervention; the depression has not effected Caitlin's eating habits nor has it affected her happiness with the normal things in life. I was, however, counseled on what to look for in the future. When Caitlin was asked how she felt about her recent growth spurt (and of course hoping she'd be thrilled) she replied “I don’t feel any different because I don’t notice any growth”. We hope she soon feels differently.

Dr. Khan from Oncology was extremely pleased with all of Caitlin’s test results. She stated that Caitlin’s blood work continues to improve and with this note she informed us that she'd like Caitlin to again attempt doing without Valtrex (the medication that prevents Shingles). Dr. Khan said that after Caitlin’s next visit in March, she will only be required to visit on a yearly basis (WOW!), yet Caitlin‘s Endocrinologist and Immunologist will perhaps still require her to be seen every six months. We can certainly handle this type of scheduling!!! And what a wonderful thing it is to be reaching a kind of 'relaxation' from Oncology!!! As always, Dr. Khan again stated that the longer Caitlin remains cancer-free, the better her chances at survival will be (how I wish we could move past this).

I perhaps had not mentioned this before, but Caitlin had continued to have trouble with her g-tube opening. If you remember, the tube had been removed last summer but it had not been ‘officially closed‘. Apparently, 60 percent of those patients with g-tubes in place over one year heal naturally while the remaining 40 percent eventually require surgical closure. Because Caitlin’s opening continued to ’seep’, she of course fell into that 40 percent bracket.

She was scheduled as an ‘outpatient’ and the procedure was over after a mere hour. When Dr. Moir met with me, he reported that “It went well and I am pleased“. He additionally said “The rest will be up to Caitlin“. To make a very long story short, following surgery Caitlin remained in the recovery room for over 4 hours; she was having a tremendous amount of pain. She repeated over and over that “Something’s wrong --- this pain can’t be normal”. Many times Caitlin was given the pain medications Fetanol and Toridol, all without relief. Finally she was given Morphine... and what transpired from this point on was certainly a nightmare re-visited. Over the course of the next hour or so Caitlin was given 13 MLs of Morphine --- again without any relief. It was explained that “Doses such as these would kill a normal person such as you or I” but that “Caitlin’s built up a tolerance and she now requires much, much more”. I was additionally told “It’s possible these drugs can no longer control her pain”. Because of the quantity of pain medications given, Caitlin’s status was changed to inpatient for the purposes of pain management only.

Later that evening Caitlin of course became nauseous, began dry-heaving, and then began vomiting. She was given Zophran for her nausea without relief (this has never worked for Caitlin)... and she then invariably asked for that old stand-by ‘IV Benedryl‘. Given her past addiction to this simple yet effective medication for feelings of normalcy during chemotherapy, the surgical team was not willing to prescribe it for her. I explained to the team that oral Benedryl is much different from IV Benedryl and that Caitlin had many times been given this oral medication in preparation for IVIG, etc. without issue. I additionally had to explain that “No rush” would be felt from a suspension if in fact that was what they believed Caitlin was after (which I knew she was not). After careful consideration, the doctors finally relented; Caitlin was given one dose of oral Benedryl and her dry heaves and vomiting then abruptly stopped. Later that evening Caitlin's nurse explained to me that “The nurses here have taken care of many pediatric Oncology patients and we see that most of these patients do become addicted to IV Benedryl. While we understand, the doctors don’t always know this”. Anyway, we somehow managed to survive the long night in the hospital (not only was Caitlin ill, but I was physically sick in just being there). When the surgical team visited the next morning, Caitlin stated “I'm ready to get out of here”! When asked if she needed any pain medications or Benedryl for the ride home, she quickly and emphatically stated “NO”!!! After a few days recovery, Caitlin is now doing well and her belly is healing nicely. I believe Caitlin will eventually be very happy that her g-tube's 'circle' has now officially been turned into a 'line'.

Caitlin had an absolutely wonderful time at camp this year. Her days were full of wonderful activities... and her nights were full of great talks and hearty laughs amongst friends. She made terrific craft projects (which she later gave as gifts to her friends), she attended the Minnesota Twins vs. the Cleveland Indians game and was one of ten children who sang the opening song on the field, she made lots of new friends... and of course she renewed beloved old acquaintances. She is again looking forward to next year's camp!

As I had previously mentioned, there was a virus and/or flu going around the camp that week; many staff and children (and all those going through treatment) had been sent home. It's certainly unfortunate that such a thing would occur during an event these children look forward to throughout the year. From what I understand, the reason believed to be the easy spread of the illness could have been due to the abundance of hugs given throughout the camp week. Apparently, hugs will not be so easily given next year (so unfortunate, for hugs mean and are so much!)! Although we had hoped Caitlin would remain well, she did in fact come down with the flu shortly thereafter. And of all times, she got sick on the very first day of the school year! She missed the next day, as well. But the positive thing to note here is how quickly she recovered --- and how fast she went from extremely ill with a temperature to a child who was just anxious to get on with the business of life! Honestly, we've never seen her recover so quickly!

As you know, soon after Mighty's death from Cancer we replaced her with yet another Miniature Schnauzer; Caitlin named this new pup Lucky. What you perhaps may not know is that Lucky is actually the ’nephew’ of Mighty... and while Dan and I were concerned about the possibility of this new pup’s health risks, we had been assured by our veterinarian the chances of this pup’s developing Cancer were “One in a million”. Although we’ve long realized that we’ve at times been that ’one in a million kind of family’, we truly did not believe ’lightening would strike twice’. Lo’ and behold, there is certainly something terribly wrong with our new dog. While we don’t know if it is Cancer and we feel perhaps it may be Diabetes or some type of heart condition, the pup nevertheless is just not right... and it breaks our hearts. To this point, nothing has shown up in the pup’s blood... yet he has no energy to bark, walk, play, or at times even eat. While we’ve been blessed with many things, sometimes it seems that if we didn’t have bad luck we wouldn’t have any luck at all.

On an extremely sad note, Caitlin has lost several of her very good friends this Summer. Andrew, our cherished and mischievous friend, suffered a major heart attack and did not recover; he had been on the transplant list for a new heart for several years, but this wish was not granted. Jonathan, a brilliant and vibrant young man, succumbed to his lifelong battle with Cystic Fibrosis (his mom and I had secretly arranged for Caitlin‘s and Jonathan‘s future marriage). And just this week the beautiful and beloved Brianna, Caitlin’s camp-mate and fellow Cancer warrior, lost her battle with this dreaded disease. The world is now forever changed with the loss of these beautiful and innocent children.

As always, thanks for checking in on Caitlin today.

Love, Janine

Thursday, August 17, 2006 10:42 PM CDT

Today we finally received a letter from Caitlin. As expected, she is having the time of her life at Camp Jornada! She wrote that she’s having “Sooooo much fun” and that “I’m having a really good time here”!!! There was no talk of missing Mom or Dad (which, after all, isn't such a bad thing). She also said that “I can’t wait until next year“, obviously meaning more camp fun!!! Mom and Dad, however, have been missing her immensely... and we can hardly wait until we pick her up tomorrow.

She has attended Camp Jornada for these past three years. Sometimes, I wonder how she does it. For us, it’s a happy return to re-visit families whom we’ve shared our lives with and to celebrate the triumphs of our children... yet it’s also sad to see so many new children recently diagnosed with cancer, those who are so sick from the disease and/or treatment, and those who are obviously permanently affected. The most heartbreaking of all is the realization of those children who are not in attendance, for they have lost their battles. In most ways, Camp Jornada is an emotional event... yet for Caitlin, she adores it! This is the one time in her life that she has said she will always be accepted --- no matter the scars, the difficulties, or the smallness of her size. She readily admits that moments are hard, such as the group discussions about cancer and the talks about what each of the children have gone through. And she has said that talking with the really sick kids is very difficult because she knows how it is and how they feel, yet she really doesn’t want to remember or revisit what she herself has gone through. Yet she has done it year after year... and she embraces the experience. I believe Caitlin will always somehow be involved with this camp... and I believe she will eventually become one of the counselors (at age eighteen, if so allowed). Although she does not like to look back, she will always find a place of belonging within Camp Jornada.

Tonight, after receiving Caitlin’s letter, I took a call from one of the counselors at camp. Apparently there has been an outbreak of diarrhea... and several children have been sent home early. I was told that “Food poisoning is not suspected at this point” and that “More than likely, it’s cases of flu”. Of course the camp is not to blame, as these type things do happen. While we are not overly concerned, we are however a ‘bit’ concerned. Dan and I are anxious about our daughter, though we constantly remind ourselves that whatever it is she’s been exposed to she should be able to fight off.

Caitlin is now registered for the 8th grade. .. and it’s hard to believe she’s where she is at (how many times have I said this?) She will begin school at the end of this month! Honestly, she has had a terrific summer... and she has enjoyed her pool, obviously has enjoyed camp, and she does continue to love her life tremendously! There is no question that she is a happy child! She has had several infections this summer (conjutivitis, pharangitis, and an ear infection)... but other than that, she has relatively remained well. I would just like to briefly mention that Caitlin has cried recently about her size (okay... perhaps not just cried, she has sobbed). And because of this Dan and I believe that all she has said before (such as “I don’t want to grow up” and “I like being small”) has truly just been some sort of defense mechanism, some sort of protection for her. But the fact that she has not grown really wears mightily upon her. Caitlin today stands that 50 1/4 inches tall... and she is maintaining her weight at 60 pounds. There has been no further growth since that 1/4 of an inch. She cries that “I just want to be normal” and that “I just want to be like everybody else“! While we attempt to reassure her and try to focus her attention on the positives, our hearts break with the realization that our words are of little comfort to her. Although on Estrogen, she continues to not have those normal feelings of adolescence. We have discussed the option of counseling.

We return to the Mayo on September 11th. Again, we will ask hard questions. We’ve been told there are other options of growth for Caitlin --- some perhaps painful. Caitlin herself will be making any final decisions. To note here is that this visit will not include a scan of any kind --- frightening in one sense, yet comforting in another!

All for now. Thanks for checking in on Caitlin!!!

Monday, July 24, 2006 6:46 PM CDT

Stacey from camp is making me say stuff on here, though I'm not sure what to say except for "Hi". Are you happy Stacey --- I've said something!?!

I've been talking to Jessie and Stacey... and I'm getting really excited for camp. It begins in about three weeks! Camp Jornada is really fun because I get to hang out with all of my friends. On one special day, they take us somewhere or do something special for us. And every year I call Stacey to see what's the 411 on what we're doing on that special day. Every year she tells me "You'll have to wait and see"! So I'm stuck waiting and waiting!

Every time I eat peas I think of my two counselors at camp. Molly and Lynn hate peas... and every time I laugh when I think about Molly getting pea salad and picking out all the peas! When I've asked her why she gets pea salad and doesn't eat the peas, she says "I like the cheese"!

This year I'll be in the lodge. It's really cool because one day out of the week we all watch a movie in the lodge --- and I can stay in the lodge instead of going out to walk to a cabin. We also get to decorate the rooms! Every year we get to prank people and I've got a few tricks up my sleeves for those counselors... but I'm not going to say what in case they are reading this which I'm sure one of them is (cough cough --- Stacey!!!)!

You probably already know that Mighty is gone, but I've gotten a dog just as good. His name is Lucky. He's the first dog that doesn't beg like normal dogs! He's the cutest thing and he's got floppy ears. I just want to hug him all day!

Well, that's all I've got to say for now. I'll talk with you later!

Caitlin

Saturday, July 8, 2006

Update: Lucky has joined our family!

June 23, 2006
Given our pup's recent cancer diagnosis, we were unsure what to do about our planned vacation. We wrestled with thoughts of perhaps taking Mighty with us or rescheduling the vacation altogether. In the long run, we ultimately decided to go ahead with our plans. Mighty had responded significantly to the course of steroids and her growths were much reduced; she certainly again seemed to be her 'mighty-self'. We left her in the loving care of Dan’s brother Mike and sister-in-law Rae --- and were happy to know that Mighty would be playing with their miniature Schnauzer, Shadow.

Our vacation to New Hampshire was truly wonderful. We really enjoyed the time we were able to visit with family and friends! We were also very relieved to see my Mom and to know that given all the health issues and hospitalizations she has experienced this year, she looks and is very well. Dan and I were also able to get away for two days (by ourselves!) and to drive along the coastline of both New Hampshire and Maine and then through the White Mountains. New England sights are always truly spectacular!

During the week we received word that Mighty had "Taken a turn for the worse". Mike and Rae had taken our pup to the vet and were told "She may only have a matter of days". We were additionally told "The vet is trying to keep her alive until you get home". We later learned that pets hide their illnesses from their owners as long as physically possible; hence the abrupt change. Needless to say, we were heartbroken.

Sometime during that 3000 mile journey, Dan and I found a place of acceptance with the fate of our pup. We spoke of the mysteries of life and death... and of the fact that there are reasons for everything, though perhaps unbeknownst to us at the time. Because cancer was again 'knocking on our door', we wondered if perhaps Mighty was being taken in place of Caitlin. We spoke of how Mighty had helped Caitlin through her second battle with cancer... and had cheered her up during many hospital stays in Rochester. We agreed that although her time with us was short, this four-legged member of our family had enriched our lives in many, many ways. Of course we also spoke of the unfairness of it all... and of our continued hatred of cancer.

We had many discussions with Caitlin regarding our choice not to treat Mighty with chemotherapy and radiation... and we also spoke of euthanasia of animals so that they would not suffer unnecessarily. Of course we spoke of the differences between people and pets --- and that only God could decide when a person was to die. Although angry, we believe Caitlin understood.

We arrived back home several days earlier than what we had originally planned and were able to spend the next few days caring for our beloved pet. We also learned how to say goodbye. With only love in our hearts, we had Mighty put down yesterday.

Although Mighty will never be replaced, we will get another Schnauzer as soon as possible. Caitlin just loves animals... and she has often said “I just can’t live without a dog“. She has asked to name our next pup and has already selected appropriate names. A female will be called ‘Hope’ and a male will be named ‘Lucky’. As Caitlin explained, we will hope that our next dog’s destiny in life will be very, very lucky.

Wednesday, May 24, 2006 8:12 PM CDT

I have heard that one of the philosophies of life is that our purpose here on earth is to learn lessons, lessons that perhaps hadn't been understood in a prior existence. I have heard that some believe our souls are reborn time and time again until we have learned all that we need to learn here on earth... and after this we finally earn our way into Heaven. I have looked at life in ways similar to this... and usually have embraced variations in life as an opportunity for growth. I have tried to take every situation we have encountered and turn it into a learning experience for not only myself, but for Caitlin as well. We had hoped to teach Caitlin to look at life on the bright side. .. through rose-colored glasses, if you will. And I believe most times Dan and I have accomplished this. But so many changes and too many heartbreaks in our life have perhaps blurred this belief previously held. Many times throughout this journal I have referred to "tiring of the lessons we have to learn in life"; this statement continues to be true.

We have found ourselves once again on the brink of change (and perhaps madness)... and no matter how hard we try to find a positive, there is no good to be found in this. There is also no other way to look at it nor can we see how or why Caitlin should learn this particular lesson in life. Our beautiful dog Mighty was just this week diagnosed with cancer... and of all kinds it happens to be the very same cancer that Caitlin herself has battled, Lymphoma.

We had not known how prevalent cancer is among dogs and cats. But even if we had realized, we never would have suspected our 3-year old Schnauzer was at risk. "What are the odds?", we would have asked. An additional surprise is the similarities --- the fever, the weight loss, the lack of appetite, swollen lymph nodes, and the tumors. We were told of treatment that could be given, both chemotherapy and radiation, and learned that the drugs given to animals are the same chemo drugs that Caitlin has been given --- Adriamyacin, Cytoxan, Methotrexate, and Vincristine. But the difference between people and animals is that there is no cure ever attained for animals, no true remission; treatment would only prolong the inevitable. We have learned that treatment actually isn’t even recommended for animals for this very reason.

So, the inevitable awaits... our beloved dog is going to die. And our child is going to watch her very best friend in life die of the disease that she herself has fought against. Mighty now runs a fever of 103 degrees, and the growths in her neck are so large that her tonsils now touch. She is having difficulty breathing.

Even given the opportunity of treatment, Dan and I decided that we were not financially nor emotionally prepared to go through a fight against cancer with Mighty. We love her so but have to accept that what it is, is what it is. We have opted to give her Prednisone (steroids) and an additional medication that will make the pain easier to bear. We have been told that she will soon be ’incontinent’... and we were told of various other horrors yet to come. We have decided that putting her to sleep, when the time is right, is the most humane thing we can do. And we have also assured Caitlin that we will all know when that time is right.

I cannot say that Caitlin is taking this well. In fact I can honestly say that the behavior Caitlin has shown this week is something we have never before seen. Upon learning the news, our slip of a child actually picked up and threw furniture. She went into absolute hysterics and shook her fists up to the heavens and cried “God is mean”. She looks to us for explanations, yet we find we have none to give other than saying “It’s Mighty’s time” and that “This is not something God did or something God wanted”. Our ’parental skills’ right now are severely lacking, for we also struggle with acceptance in losing our beloved pet.

The vet has not given us a time frame, yet he has said “It won’t be long”. As we know all too well, Lymphoma is an extremely aggressive cancer. And Mighty has gone, in just a matter of one day, from a healthy pup to one that is dying. For Caitlin to handle yet another tragedy in her life, makes no sense at all. Yet in the meantime, Caitlin is treating Mighty’s fever with ice-packs... and she has said that she has never hated cancer so much as now. Caitlin said that “It’s worse when someone you love has cancer and to watch them go through it”...

Sunday, May 14, 2006 8:45 AM CDT

Caitlin’s recovery from her recent mystery illness continues to be a slow but steady process. Although she still naps frequently and her lost weight is slow to be regained, Caitlin does say that "I feel great"! We are so grateful that her recent illness was not a sign of anything ominous.

Much to Caitlin's delight, the end of another school year draws to a close. Although she has missed quite a bit of school this year, she has done extremely well and has made honors throughout the year. We've received an invitation from the school to attend the upcoming 2005-2006 Honors Program, an invitation extended only to parents of those children receiving an award. Dan and I continue to be amazed at what our child has overcome... and all that she has accomplished.

We have just this week learned the identity of Caitlin's donor (the two year wait had to do with requirements of his country but additionally the donor had to agree to release his personal information to us). Caitlin's donor is 36 years old, he is from Braunschweig, Germany, and his name is Florian. It is hard to explain, but we have had an emotional week just in learning this man's identity! We are overwhelmed with gratitude for this kind man... and for the time and the life he has so generously given our daughter. We had long suspected that Caitlin's donor was from another country, but the verification of this fact has again amazed us with the process that was undertaken in searching for a suitable donor for Caitlin. It's remarkable that her perfect match was found in Germany!!!

You perhaps have heard of the recent separation of conjoined twins done at the Mayo... and perhaps you have even seen the physician Dr. Christopher Moir credited with this miracle on television. But what you perhaps didn't realize is that this very same man is the 'magician' who has saved Caitlin's life several times... the man that has done all of Caitlin’s tumor and bowel resections, surgeries, and the likes! Although these two beautiful little girls are still at tremendous risk, the separation was a success... and we can certainly testify that they are in the best of hands! Honestly, our world is so blessed to have such a skilled physician who is able to save children's lives each and every day!!!

In the next few weeks, we will begin a long-awaited vacation. We are heading east... and will be driving cross-country to spend a few weeks in New Hampshire with my family! Not only has it been many years since we’ve been on vacation, it has also been many years since I’ve been home. I can’t wait to see my Mom!!!

Thanks for checking in on Caitlin today. All is again well!!!

Tuesday, May 2, 2006 8:09 PM CDT

Miraculously ... and somehow, Caitlin is all right! She has returned tonight from the Mayo almost as if a changed person, and whatever she's been going through these past nine days seems to now be finally working it's way out!

Caitlin was checked over from head to toe. She additionally had tests of her liver and kidney functions, blood tests, and another stool test done. Although nothing again was found in the stool, her liver enzymes were in fact elevated; Dr. Khan said liver enzymes would be elevated if Caitlin has had a viral infection.

Many times Caitlin was asked if any of her friends had been sick and although she always answered "No", we had been told a lot of stuff has been going around the schools. Dr. Khan also made reference to the fact that because of her transplant and her immune disease, Caitlin's immune system is "Still not ideal" and that “An infection going on in her would always be worse than someone else's case“. The doctor then said that a component of the blood that would give an indication that Caitlin's Lymphoma had returned was normal (music to our ears)!!! Although we had given Caitlin Pedia-Lyte throughout this illness, she was still severely dehydrated; she was infused with fluids at the hospital --- and she felt terrific afterwards! At the return appointment today, Dr. Khan stated that she felt Caitlin was on the mend... and that no further testing was necessary!

It seems that for Dan and I, the worry over her gets worse each time she is ill. Dan and I both agree that this time we each felt her cancer had returned; we were envisioning another protocol of chemo, perhaps being told chemo would not work, vomiting, hospital stays, and the possibility of even losing her. These last nine days have been hell. But if I were to check back in this journal, I would perhaps find other entries stating the very same thing; all of her illness are the ’worst’... and each seem to overwhelm us with uncontrollable fear. Although it seems that with time we should be less worried, it appears to have the opposite effect for us; the longer time passes, the more Dan and I tend to worry.

I thank you all for keeping Caitlin in your prayers... and yes, we certainly do appreciate the power of these! Who’s to say, perhaps it was these prayers that made all the difference in the outcome! I do, however, apologize for the worry I had passed on to you... and I have no excuse other than the constant fear that we live with day to day. I admit openly to the fact that we do lose it from time to time... and these past days have certainly been one of these times! For right now we are thrilled with the outcome of her Mayo visit... and that for today, we have some peace of mind...

Sunday, April 30, 2006 9:30 PM CDT

It has been one of those weeks, with not distant enough memories revisited. Caitlin has been ill since last Sunday... and has had uncontrollable diarrhea; she has not been able to attend school. While this subject is not the most pleasant, Dan and I have long learned and appreciated the importance of the functions of our daughter's bowel (especially since her first cancer appeared in this area... and given the resections that followed). This week has been similar to war in a sense... with the 'onslaught of an enemy'. For many years we have feared this function of hers... and the appearance of anything unusual.

Her stool has been tested, but surprisingly the results were normal. We have been assured by Dr. Huettman that "There's a lot of sicknesses out there right now causing diarrhea". And ok, maybe there are a lot of reasons for this. But my husband's statement yesterday sums it up for us right now... "I can't breathe".

I'd like to say we are moving on... and I'd like to say that life is 'grand'. While we are not complaining mind you (we've had so many blessings!), cancer and Caitlin's chance of survival is always uppermost in our minds. We do not know if this is a sign of her cancer returning, or if she just has some nasty type infection that she's trying to work through. But I have to say once again and forevermore how WE ABSOLUTELY LOATHE CANCER! There is nothing normal about our lives.

Caitlin and I just this week had the most amazing of talks, not in the sense you may imagine... but in the way that shook me to the very core. Her Science class continues in the study of cells and apparently a discussion of radiation has recently taken place. Caitlin's Science teacher had been talking about the ill effects of radiation (perhaps because of the anniversary of Chernobyl?) and Caitlin participated in the discussion by admitting "I've had radiation". Her teacher asked many questions, of which Caitlin answered in her own way and with her own sense of truth (she so seldom opens up about this). Following much discussion, the teacher stated that "I have taught three children with cancer, the first two had Leukemia and now I've taught a child with Lymphoma". From what Caitlin told me, the teacher went on to explain that the first two children lost their battles. Caitlin's reply to this was "They had a very bad cancer that can't be cured... but I've been cured from my cancer". Caitlin stated this to me very matter of factly... and with total belief in what she was saying. In just one second, I realized that although Caitlin has been through more than any child should be asked to go through and even given all of her scans and all of her doctors words, she truly did not understand the reality of her situation. Somehow she has blocked all of this out. I was absolutely blown away.

Whether it was right or wrong, I felt I had to tell her the truth. I told her that we certainly did hope she had been cured... and that her transplant did give her what she has been needing all of her life. I explained that there truly was no cure for cancer... for any kind. I told her of how her doctors had said that “We never know which child will live and which child will die“. She asked me “Are you telling me that my cancer could come back?” and I had to answer truthfully “Yes, it could Honey. But we certainly hope that it doesn’t”. She seemed shocked... and she was very upset --- as if this was the first she had heard of this. She abruptly left the dinner table and began playing games on our computer; within five minutes she was whistling and then singing. I asked her later if she had any questions... and she said “That’s just what my teacher said” but that “No, I don’t have any questions”. From there, I didn’t know what else to do or say.

I will never know if I did the right thing. I was very upset that my mother disagreed with what I did; Mom felt that I should have sugar-coated the conversation and let Caitlin believe what she believes. Dan, however, said how grateful he was that I was the one involved in this conversation... and that I did the right thing in telling her the truth (I called him at work that night, something I usually never do). My thought here is that I never want to lie to this child, and that I never want her to question or doubt what we have told her. If her cancer was to return, I would never want to hear that we had not told her. Dan and I never want Caitlin to not believe in us... and we never want her to question our honesty. So in the end what it is, is what it is. And I now can't take back that moment that perhaps shattered her hopes and her dreams.

It has been raining for days here in Iowa... and this seems par for the course. Although Dan and I had desperately been watching for signs of improvement in Caitlin, there has been none. Seven straight days of not feeling well, uncontrollable diarrhea, nausea, inability to eat, weight loss, and now tonight Caitlin is saying her legs hurt (something she complained about with both cancers). No, we do not know what this all means. Suffice to say that we are hoping for the best, but can’t help but fear the worst. When Caitlin announced tonight that she needs to be seen at the Mayo, I placed an immediate call. Dr. Arndt was the Pediatric Oncologist on call this evening... and although her words weren’t comforting, she did say that perhaps Caitlin’s current condition wasn’t related to cancer. Dr. Arndt wants Caitlin at the Mayo tomorrow...

And so tonight I am putting out a request for prayers, for all children in desperate ways. But I am especially asking for prayers for our Caitlin... and that the beast has not again reared it’s ugly head.

God bless...

Janine

Sunday, April 16, 2006 9:43 AM CDT

I apologize for the tardiness in updates. I have no excuse, really... other than I just didn't think of it (and that's not such a bad thing). Caitlin is just fine, and her recent appointments at the Mayo went very well. The appointments were, in fact, the most 'boring' of appointments she has ever had! We’ve no complaints about that!

Of course our main concern was the scans for cancer... but thankfully the results were clear! Our beloved Dr. Matsumoto continues to care for Caitlin behind the scenes in the reading of all of her scans --- and I know this physician goes through Caitlin's results with a fine-toothed comb! The results of Caitlin's 'FISH test' show that "Of 500 nuclei, 100 percent have XY signals and 0 percent have XX signals" (I take this to mean that 100 percent of Caitlin's blood is male and this is hoped for because Caitlin's donor was a male). At last check, Caitlin's nuclei had been 99 percent male --- so she has now certainly gotten to where she needs to be! Other blood test results showed nothing too serious out of the ordinary, and she continues to 'be in range' on those most precious Lymphocytes (she's currently at 2.35 in the normal range of 1.2 - 5.2). It was noted that Caitlin's 'Natural Killer' cells (a function of her immune system) continues to be low... and it was mentioned that these may never increase. There was also some disagreement amongst her team as to whether Caitlin has grown 3/4s of an inch or only one centimeter during this past year. But in the long run, all do agree that Estrogen is working well for Caitlin... and the Bone Age Study done on her does show that she has "potential for future growth". Although it was mentioned that Caitlin is not growing due to her previous radiation treatment, Dan and I know that she hasn't grown in many, many years even prior to any type of treatment. What it is, is what it is... and for whatever reason that may be. She did weigh in at an astonishing 60 pounds, a goal we've worried she would never reach; this was very good news! There was additionally much discussion about the fact that Caitlin has had a 'cycle', a surprise to us all (we had previously been told that this perhaps would never, ever happen). Apparently it is much too soon for Caitlin to be experiencing cycles given all she has been through so this is not something we should wish happens (but on the positive side Caitlin is 'in the know' with her peers and she is very happy to be able to say "Oh yeah, I've had that..."). Dan brought up the question of the likelihood of her cancer recurring, but no member of the team was willing to venture a guess or a statistic about this one. During the visit Caitlin completed paperwork to request information about her donor... and she even asked that they be allowed to meet. In conclusion, we are to continue her checkups and scans every six months.

Upon return from this Mayo visit, cases of Mumps began to appear in Iowa. I'm sure many of you have heard that our state (and several others in the Midwest) has had the worst outbreak of Mumps in 20 years! At one point, cases in our state seemed to jump from 70 to 300 almost overnight! Of course this was a great concern to us, given the fact that Caitlin cannot be inoculated with any live viruses (MMR and Chicken Pox vaccinations) and the fact that she still continues to be at risk. I called Dr. Boyce (Immunology/Infectious Disease) at the Mayo who initially told me that Caitlin has a new immune system in place and that he expected her to be just fine. He continued with “Of course we’re unsure about her Natural Killer cells...”. At that point I had to make a confession... “Doc, last week we just didn’t have the money to refill her prescription of Valtrex right away. Within three days of stopping the Valtrex she again broke out in Shingles”. Dr. Boyce then quickly said “What time can you get here“? After several telephone conversations and some quick arranging on Dr. Boyce’s part, Caitlin and I were on the road to the Mayo early the next morning. She was given an emergency infusion of IVIG (it’s been about 8 months since her last one) with the hope that the protein from many donors would have antibodies against the Mumps and would therefore give her some needed protection. I can’t say that this infusion went well because in fact it was one of the worst she has ever received; it was very hard on Caitlin and she had just about every side effect possible. But after the 8 plus hours spent in the hospital getting the infusion, she now has that needed protection. Dr. Boyce said that he will continue to check with the Iowa Health Department to check current statistics on the Mumps outbreak in our area. He also mentioned the possibility of her receiving one or two more additional infusions.

Just last week Caitlin finally received her last series of childhood vaccinations; the worrisome time without protection is now thankfully over. But while some of our fears have been appeased, other concerns continue to appear (the threat of the Avian Flu, for one). I remember my Mom telling me many years ago that “Now that you’re a parent, your life will never be the same... and your worries will never end”. This continues to be true...

Best wishes for a blessed Easter --- and a wonderful spring!

Monday, March 13, 2006

UPDATE: Caitlin's appointments aren't nearly done, but we've gotten the results from the biggest and most important one --- HER SCANS WERE CLEAR AND SHE REMAINS CANCER FREE!!!

Thurday, March 9, 2006

As parents, we all truly do want the same things --- we want our children to learn from our mistakes and to not make the same, we want them to do better than we did in all things and to go further, we want them to have more opportunities than we were ever afforded and we'll do everything possible to make it so, and more than anything we want our children to be happier, to live a better life, and to truly be a better person than we ever could be. We as parents do the best we can... and hope and pray for the rest. It’s true that until your children are born, you never think you can love someone or something as deeply. But from the beginning to the very end of time, we will all have challenges with our children. No matter the planning and the endless thought put into their upbringing, we ultimately learn and accept that life cannot be controlled; fate unfortunately will always impart those twists and turns along the way.

Of all things we had dreamed, hoped, and planned for Caitlin... cancer was never included in the picture. Her health has shaped our lives... and set our path; with no control, we just follow along. Poor health and recurrent disease was never something we had envisioned for the child that we prayed for and finally were blessed with. Are we angry? Honestly yes, at times we are --- but then we feel guilty for that anger. We still know we are one of the lucky ones, for our child is still with us.

I've mentioned that Caitlin has not been well this winter and I'm sure I also mentioned that Dan and I have been worried. This winter we've had more calls from the school nurse than we care to recall and she's had more sick days from school than we want to admit. The weeks prior to an upcoming scan for Caitlin has always been a time of tremendous turmoil for us. We watch, we listen, and we wait... and of course we worry (I admit we do read into things too much). For some time we've been asking Caitlin if her cancer was back and although she has consistently told us "No", we do remember that she didn't feel her second cancer. We’d worked ourselves into such a frenzy that we had begun crying again... and our hearts truly ached. There was even a day or two when I finally admitted to myself and out loud that her cancer was back.

Two weeks ago Caitlin was diagnosed with a bronchial infection, but thankfully her chest x-ray showed normal lungs. She was put on another brief course of steroids and an antibiotic. It's hard to explain... but Dan and I were thrilled! We were so absolutely excited and relieved that there was something 'normal' and 'simple' wrong with her --- something that could easily explain away all of her symptoms. Since treatment, Caitlin quickly recovered... and Dan and I can breathe again. Perhaps one day we'll get used to all of this.

Caitlin and Dan will be leaving for the Mayo this Sunday. Although we feel much better about these appointments than we did a few weeks ago, our prayers for her will always continue. If the scans are clear, this will be longest amount of time Caitlin has been cancer-free since the beginning of her battle! Now that’s something to shout about!

Caitlin also recently passed her 2-year anniversary of the stem cell transplant --- oh, what a blessing! Throughout that day, one thought kept resurfacing in my mind... the words of Caitlin’s Mayo physicians two years ago warning us of the upcoming dangers --- “Caitlin is at the potential for life-threatening consequences because of transplant, but if we don’t proceed the lymphoma will take her life”. We are very lucky indeed! And with each passing year, her chance of survival improves!

Because Dan has taken Caitlin to the Mayo these last few times, I recently was asked by a friend “Janine, what do you do when Caitlin and Dan are at the Mayo”? I didn’t have to think about that one, for I know all too well the answer... I replied “I sit, I wait, and I worry... and I want that phone to ring”. As I said before, perhaps with time we’ll get used to all of this.

Anyway, if I may ask --- please keep Caitlin in your thoughts and prayers this upcoming week. And as always, remember to keep all the other children and their families out there in the thick of the battle in your prayers. Tonight I am praying for the child Kyle, a beautiful 5-year old from Iowa who just passed from cancer. His family truly needs our prayers.

Janine

Saturday, February 11, 2006 9:49 AM CST

BELIEVE: to have a firm religious faith and to accept trustfully as true, genuine, or real; to have a firm conviction as to the reality, ability, or goodness of something; to hold as an opinion. Believing in miracles, believing in the power of positive thinking, and believing in the healing power of prayers has been a philosophy which has wholeheartedly been embraced by our family since Caitlin's first cancer diagnosis in 2000. This way of thinking has not only gotten us through many a dark day, we trust it has brought us to where we are today. Caitlin stands before us as a testament to the fact that miracles can and do occur.

Imagine my surprise upon opening the Christmas gifts that Caitlin so lovingly selected to find a plaque inscribed with the word “BELIEVE”. There was also a trio of petite boxes and a beautiful beaded chain along this same 'miracle' theme. Caitlin quietly whispered that “We have to always believe in miracles”; through tears I promised “I will never forget”. To say the least, Dan and I were overwhelmed ... and completely blown away over the beauty and depth of our daughter.

While Caitlin remains relatively well she has, unfortunately, had her share of sickness this year. In addition to those mandatory days off of school with known exposure to Whooping Cough coupled with existing symptoms, Caitlin has missed many other days due to nagging respiratory problems. It seems that her cold and cough has been non-stop for months! As of late, she has also begun complaining of belly trouble. Although it has been a long time since she has had stomach aches and certainly for the rest of our lives we could do without, there are some things you just cannot wish away. Given the fact that she lost sections of her small intestines and her entire cecum to cancer, we remain acutely aware that Caitlin's physicians expect her to have belly troubles all of her life. Of course Dan and I continue to worry about our daughter's health and no matter how hard we try to 'forget the cancer thing', it is ever present in our lives.

We do have some very important upcoming events to report. First and foremost, the second year anniversary of Caitlin's stem cell transplant is March 5th. It is amazing to realize that all this time has passed for it seems as if only yesterday we were forewarned she probably would not survive. Dan and I will never forget those terrible words "The transplant is Caitlin's last chance at survival". How blessed we are to be going strong two years later! In view of the fact that two years have now passed, we will also soon know the identity of Caitlin's donor! Although we get the impression that this man does not want thanks nor any further contact from us, we will be happy to at least know his name and where he is from.

Caitlin also has upcoming two-year post transplant appointments at the Mayo scheduled during the second week in March. All departments (Oncology, Endocrinology, Pulmonary, Immune Deficiency, Gynecology, Infectious Disease, Ophthalmology, etc.) will be visited and she will be retested to see what has perhaps changed since her transplant and treatment. We hope and pray for good results. Additionally, Caitlin will be receiving the last of her childhood immunizations during the first week in April.

Although we had been hopeful for the power of Estrogen, Caitlin has not shown additional growth since that spurt last Spring. She continues to stand 50 and a quarter inches tall (4 feet 2 inches) and we wonder if this is all she will ever grow to be. But as with all things, Caitlin continues to do well with what has been given her. She has told me stories of how the upperclassmen like to stop her in the school halls... and how they like to tower above her and then bend down to get in her face. Caitlin tells me that they say “You’re in the wrong school“ and “You’re way too small“. With a tremendous grin on her face, Caitlin tells me that she then 'whacks' the boy's foreheads with the palm of her hand... and tells them that "You don't intimidate me!" She tells me that they soon go on their way... and seem to then respect her for her 'spunk'. My goodness, I would imagine so! We're so glad she has found her way in life.

Caitlin still periodically introduces discussion and asks questions about the medical journey she has traveled, something she was never able to discuss at the time. It appears she has blocked quite a bit from her consciousness and can only take pieces of these memories in very small portions. We also notice then when we initiate a discussion she will quickly dismiss further talk by saying "I don't want to think about the cancer thing" and she will then abruptly walk away. We certainly can understand and appreciate that these type discussions can only be when Caitlin is ready for them.

Thank you for continuing to care about our daughter --- and for checking in on her today!

Saturday, December 24, 2005 8:05 AM CST

As you can see by the new picture, Caitlin is doing terrific... and she is still very much in love with her life! If her joy could be bottled up and spread around the world, there's no question we'd all be living in a much better place! Of course she loves every season throughout the year, but Caitlin is particularly fond of Winter (maybe it's because she always seems to be in the hospital during the Winter --- and this year she isn't!). She just loves suiting up in all her cold-weather gear and being outside building snowmen, forts, and leaving magical impressions of angels in the snow! And she has always said that the cold, clean air helps her “breathe better“.

With all the beauty that Winter brings we have, however, had a few recent scares. The bitter cold temperatures have brought about a re-emergence of Caitlin's old persistent and nagging respiratory problems. She's been running low-grade fevers off and on, has had difficulty breathing and catching her breath, has again begun coughing, and she has even complained of that old feeling of fatigue. She's visited our private physician a few times, has been on concurrent courses of antibiotics, has had swollen lymph nodes, is again receiving neubulizer treatments, and was even prescribed a brief course of steroids.

Given she is just now at the exact point in her care when the second cancer occurred, our initial thought naturally was of the worst. When we asked that same question we have been asking for years --- “Does it feel like cancer?” Caitlin, without missing a beat, quickly and authoritatively responded “You have to quit jumping to conclusions! The cancer thing is over"!!! Ok, so this is a child that knows --- we have no problem eating humble pie where this is concerned! But irregardless of her conviction, Dan and I had really been worried. Pneumonia was also right up there on our list of concerns... and of course then there's the other issue of rampant Whooping Cough in the public schools this year (Caitlin herself has been exposed three different times this school year). But in the end and to make a long story short, her recent chest x-ray said it all --- her lungs are "perfectly normal". This was exactly what we needed to hear! Dr. Huettman assured us that Caitlin is just taking a little bit longer to recover from this respiratory problem.

The Christmas season is now truly upon us and we are thrilled it has finally arrived. For weeks now Caitlin has been pumping us for information about her gifts... and it has taken serious thought to outwit her! Like all children, she is anxious for Christmas day... yet she is also grown up enough to be just as anxious to give the gifts she has purchased for others. Caitlin decided to spend the birthday money she received on Christmas presents for her parents and friends... and I will never forget the day I took her out shopping and how she delighted in spending her own money on gifts for others. When I told her how proud I was of her and said what a wonderful person she is growing up to be, Caitlin for the first time in her life did not respond with her usual answer of “But I don’t want to grow up” (I've always worried that she's had some sort of sixth sense about her life and had a feeling of perhaps not growing up). This time she accepted the compliment graciously and seemed very pleased with the fact that she is 'growing up'. It was a happy first.

Recently Caitlin was asked by her Science teacher if she was interested in getting extra credit in class. Her Science class has this semester been studying cells and her teacher asked if Caitlin could bring in copies of her blood test results during the time she had cancer and when she did not. She was also asked if she could bring in pictures of cancer cells in the bone marrow and in the blood. Caitlin excitedly asked Dr. Boyce if he could assist in this endeavor and of course he willingly supplied copies of all reports. From what Caitlin told me, when she brought these documents in her teacher quickly put the reports in protective covers. Caitlin was then told she would now forevermore be a part of the study of cells in 7th grade Science class.

Given how well Caitlin is doing, you would think that Dan and I are just fine --- and we are truly. Yet we both agree that we still are always on the verge of tears. I can't explain it really, we're so happy to be where we are at... yet this 'thing' seems to be forever present in our lives. A word, a Christmas card, or pretty much anything can shake us to the core and bring us to our knees. Perhaps given time we will move past this.

I'm sure you all remember my speaking of Dr. Anderson... a physician we credit for Caitlin's life one or two times over. He recently took a position in Texas at MD Anderson... and he now spends his time researching the cure for pediatric cancer. Caitlin recently received a Christmas card from him... and the last line in his note said "Making cancer HISTORY". I can't tell you how reassuring it is to know that Doc Anderson is out there making cancer possibly a thing of the past.

Have a Merry Christmas!!!

Janine

P.S. Below is a beautiful story recently sent me... and I just had to pass it on. We believe in miracles too!

Believe in MIRACLES!!

Three years ago, a little boy and his grandmother came to see Santa at Mayfair Mall in Wisconsin. The child climbed up on his lap, holding a picture of a little girl. "Who is this?" asked Santa, smiling. "Your friend? Your sister?" "Yes, Santa," he replied. "My sister, Sarah, who is very sick," he said sadly. Santa glanced over at the grandmother who was waiting nearby, and saw her dabbing her eyes with a tissue. "She wanted to come
with me to see you, oh, so very much, Santa!" the child exclaimed. "She misses you," he added softly.

Santa tried to be cheerful and encouraged a smile to the boy's face, asking him what he wanted Santa to bring him for Christmas. When they finished their visit, the Grandmother came over to help the child off his lap, and started to say something to Santa, but halted. "What is it?" Santa asked warmly. "Well, I know it's really too much to ask you, Santa but ..." the old woman began, shooing her grandson over to one of Santa's elves to collect the little gift which Santa gave all his young visitors. "The girl in the photograph ... my granddaughter .. well, you see .. she has leukemia and isn't expected to make it even through the holidays," she said through tear-filled eyes. "Is there any way, Santa ... any possible way that you could come see Sarah? That's all she's asked for, for Christmas, is to see Santa."

Santa blinked and swallowed hard and told the woman to leave information with his elves as to where Sarah was, and he would see what he could do. Santa thought of little else the rest of that afternoon. He knew what he had to do. "What if it were MY child lying in that hospital bed, dying," he thought with a sinking heart, "this is the least I can do."

When Santa finished visiting with all the boys and girls that evening, he retrieved from his helper the name of the hospital where Sarah was staying. He asked the assistant location manager how to get to Children's
Hospital. "Why?" Rick asked, with a puzzled look on his face. Santa relayed to him the conversation with Sarah's grandmother earlier that day. "C'mon .... I'll take you there," Rick said softly.

Rick drove them to the hospital and came inside with Santa. They found out which room Sarah was in. A pale Rick said he would wait out in the hall. Santa quietly peeked into the room through the half-closed door and saw little Sarah on the bed. The room was full of what appeared to be her family; there was the Grandmother and the girl's brother he had met earlier that day. A woman whom he guessed was Sarah's mother stood by the bed, gently pushing Sarah's thin hair off her forehead. And another woman who he discovered later was Sarah's aunt, sat in a chair near the bed with weary, sad look on her face. They were talking quietly, and Santa could sense the warmth and closeness of the family, and their love and concern for Sarah. Taking a deep breath, and forcing a smile on his face, Santa entered the room, bellowing a hearty, "Ho, ho, ho!"

"Santa!" shrieked little Sarah weakly, as she tried to escape her bed to run to him, IV tubes in tact. Santa rushed to her side and gave her a warm hug. A child the tender age of his own son -- 9 years old -- gazed up at him with wonder and excitement. Her skin was pale and her short tresses bore telltale bald patches from the effects of chemotherapy. But all he saw when he looked at her was a pair of huge, blue eyes. His heart melted, and he had to force himself to choke back tears. Though his eyes were riveted upon Sarah's face, he could hear the gasps and quiet sobbing of the women in the room.

As he and Sarah began talking, the family crept quietly to the bedside one by one, squeezing Santa's shoulder or his hand gratefully, whispering "thank you" as they gazed sincerely at him with shining eyes. Santa and Sarah talked and talked, and she told him excitedly all the toys she wanted for Christmas, assuring him she'd been a very good girl that year.

As their time together dwindled, Santa felt led in his spirit to pray for Sarah, and asked for permission from the girl's mother. She nodded in agreement and the entire family circled around Sarah's bed, holding hands. Santa looked intensely at Sarah and asked her if she believed in angels. "Oh, yes, Santa ... I do!" she exclaimed. "Well, I'm going to ask that angels watch over you, "he said. Laying one hand on the child's head, Santa closed his eyes and prayed. He asked that God touch little Sarah, and heal her body from this disease. He asked that angels minister to her, watch and keep her. And when he finished praying, still with eyes closed, he started singing softly, "Silent Night, Holy Night ... all is calm, all is bright." The family joined in, still holding hands, smiling at Sarah, and crying tears of hope, tears of joy for this moment, as Sarah beamed at them all. When the song ended, Santa sat on the side of the bed again and held Sarah's frail, small hands in his own.

"Now, Sarah," he said authoritatively, "you have a job to do, and that is to concentrate on getting well. I want you to have fun playing with your friends this summer, and I expect to see you at my house at Mayfair Mall this time next year!" He knew it was risky proclaiming that, to this little girl who had terminal cancer, but he "had" to. He had to
give her the greatest gift he could -- not dolls or games or toys -- but the gift of HOPE. "Yes, Santa!" Sarah exclaimed, her eyes bright.

He leaned down and kissed her on the forehead and left the room. Out in the hall, the minute Santa's eyes met Rick's, a look passed between them and they wept unashamed. Sarah's mother and grandmother slipped out of the room quickly and rushed to Santa's side to thank him. "My only child is the same age as Sarah," he explained quietly. "This is the least I could do." They nodded with understanding and hugged him.

One year later, Santa Mark was again back on the set in Milwaukee for his six-week, seasonal job which he so loves to do. Several weeks went by and then one day a child came up to sit on his lap. "Hi, Santa! Remember me?!" "Of course, I do," Santa proclaimed (as he always does), smiling down at her. After all, the secret to being a "good" Santa is to always make each child feel as if they are the "only" child in the world at that moment. "You came to see me in the hospital last year!" Santa's jaw dropped. Tears immediately sprang in his eyes, and he grabbed this little miracle and held her to his chest. "Sarah!" he exclaimed. He scarcely recognized her, for her hair was long and silky and her cheeks were rosy -- much different from the little girl he had visited just a year before. He looked over and saw Sarah's mother and grandmother in the sidelines
smiling and waving and wiping their eyes.

That was the best Christmas ever for Santa Claus. He had witnessed --and been blessed to be instrumental in bringing about -- this miracle of hope. This precious little child was healed. Cancer-free. Alive and well. He silently looked up to Heaven and humbly whispered, "Thank you, Father. 'Tis a very, Merry Christmas!

Friday, December 2, 2005 8:30 PM CST

We have recently received the written summary of Caitlin's last Mayo visit. I am ecstatic to relay that a new word appeared within this document... a word Dan and I thought would never ever be spoken, much less written. Yet there it was on paper... appearing almost as if a beacon. This new word added to our current vocabulary is "SUCCESSFUL" ... and it was used in the following way:

Final Diagnoses:
~ Common Variable Immunodeficiency
~ History of Non-Hodgkin's Lymphoma
~ Status Post SUCCESSFUL Bone Marrow Transplant

Needless to say, we cried over the use of this one simple word for what it implies is absolutely enormous. We are most humbly and eternally grateful.

The summary additionally reported the lab results that we have been anxiously awaiting and I believe Dr. Boyce’s words sum it up perfectly --- "Caitlin's immunoglobulins and T and B cell subsets look great". NK (Natural Killer) cells had previously been low and because Caitlin has had recurrent Shingles, she will continue on Valtrex and be retested again in six months. The report also stated that "Caitlin's initial problem after transplant was chronic lung disease but according to pulmonary function tests and symptom-wise, she has been slowly improving". All physicians seen reported that Caitlin has had good response to Estrogen and that the physical exam revealed that she has progressed from ‘Zero Tanner Stage’ to ‘Tanner Stage 2’ (the stages of puberty). Mention was made of adding Progesterone in approximately two years. All reported that “Caitlin looks wonderful”.

We had worried that something might have shown up in her labs suggesting the need to restart IVIG, yet no mention was made of this product in the report. IVIG is by no means a simple infusion; not only does the patient suffer mild to moderate reactions such as headache, fever, chills, vomiting, back pain, etc., but Intravenous Immune Globulin products are also associated with more serious risks such as renal dysfunction, renal failure, thrombotic events, changes in blood pressure, and even death... just to name a few. We are thrilled that Caitlin can now successfully live without this product!

Of course there were the standard negatives mentioned in report such as stunted growth, delayed puberty, ovarian failure, risk of endometrial dysplasia, and the dangers associated with Estrogen replacement given Caitlin's past malignancies. These will just be added to our other long list of worries! All things considered, the written report was very positive!

Caitlin has surprisingly continued to open up about her past struggles... and we welcome these opportunities for family discussion. One day when she was eating one of Dan’s fabulous dinners she said “You know, I’m always so amazed that I can eat. I really never thought I’d be able to do this”! She also later asked us, “What would you do if I died?” Although this came out of the blue and we were totally unprepared, we hope we answered her appropriately. Dan and I stated that of course our lives would never be the same... and that it would be very difficult to go on without her. We also told Caitlin that if we lost her we would count the days until we could be with her again. We explained that we would be very, very good in our lives so that we could join her in Heaven. Caitlin seemed very pleased with this answer and she then just continued on with her dinner. I don’t know why she has been thinking along these lines and I’m certainly not trying to read into anything. I am hoping she is now just finally sitting back and analyzing what she has been through.

One of Caitlin’s favorite sayings is that “Life is grand” --- and we admit that right about now this saying is the absolute truth. We are at a place that is truly remarkable and wonderful! Although we wish at times for life to stand still, it somehow manages to charge forward. We are grateful for the day.

For the first time in many years, we have decorated our home with every single Christmas possession that we have... and we are looking forward to the holiday with an indescribable happiness. We hope and pray your holidays are joyous, as well!

As always, though, please remember to keep the children in your prayers.

Janine

Thursday, November 3, 2005 8:17 PM CST

All is well, and prayers and well wishes continue to work powerful magic for Caitlin. The anniversary of her two Cancer diagnoses has quietly come and gone. She is doing fabulous --- and is much stronger than we have seen her in years. It has been 20 months since her Stem Cell Transplant, 20 months considered in remission from her 2nd Cancer, and it's nearly one year since her last hospital stay (a true record!). There isn't a day that goes by without Dan and I whispering prayers of gratitude for our good fortune and the life of our daughter. She will turn fourteen this Sunday.

Caitlin continues to not only amaze us, but to show us what life is truly about... and how to live it well. She embraces each new day with excitement and open arms! She loves her life more than mere words could express! The school year is going extremely well for her and she seems to finally have 'come into her own'. This school year is much different than last in that she now seems to be accepted by her fellow classmates; there is no teasing this year. Caitlin is also now finally maturing and she is very clear on who she is and how she is going to proceed in life. She follows her own heart and as of yet does not 'follow the crowd'. We are very proud of the fine, young lady she is becoming.

Dan and Caitlin have just returned from a Mayo visit. Caitlin was seen in all of the usual departments and went through all of the standard tests. She weighed in at 57 pounds and stood 51.4 inches tall; a small increase was noted. Her lab results, however, showed significant improvement. Dr. Boyce from Immunology even said "Her blood work is as good as mine!" Although the T&B Cell and specialty tests are still pending, we do know that Caitlin's Lymphocytes are now up to 2.29 (the range is 1.2 - 5.2), and her Leukocytes and Neutrophils are also within range! It appears that taking her off of IVIG has not caused any harm!!! It was also mentioned that in about six months or so Caitlin will perhaps be taken off Valtrex, the medication that prevents Shingles from recurring. Slowly, the medications are disappearing one by one! Caitlin’s doctors were not only impressed with her blood work, they were equally thrilled with her response to Estrogen. And although the effect is gradual, Caitlin is finally beginning to develop. The visit was extremely positive --- and ended with the note that Caitlin will not have to be seen at the Mayo for six months!!!

Although Caitlin has had a few minor sicknesses here and there, she truly has not been ill in quite some time. Several weeks ago Caitlin was even exposed to Whooping Cough at school and she did later begin to show symptoms; with treatment, however, Caitlin quickly recovered! Had this happened a year or so ago, I’m sure she would have ended up in the hospital!!! This success has been a long time coming!!!

Caitlin’s way of dealing with her illnesses has always been to put it out of her mind. She still rarely talks about her Cancer or the treatment she endured, but every once in a while something does come to light. Dan and I were recently surprised when Caitlin told us the story of a classmate who expressed his strong feelings about Bone Marrow Transplants (similar to Stem Cell Transplants). He apparently said something along the lines of “It’s just not right that babies should be killed for this”. We were equally surprised when Caitlin then admitted that she didn’t speak out. She confessed to not really understanding this part of what she had been through... and she asked specific questions about her transplant. Given the opportunity, Dan and I of course talked incessantly about our feelings and emotions on this issue. After patiently listening to us, Caitlin finally stated that she hadn't understood it was a fight for her life... and that she hadn’t realized it was our very last option for her. She also said that she did not know an adult had willingly given of his cells so that she might live. Dan and I went on to explain that although our country is divided on the issue of stem cell research, no babies are killed for this purpose. Ours was a long discussion... and hopefully we have given her the information she needed. We pray she doesn’t ever have these feelings of guilt again. Several days later Caitlin told me that she confronted the boy and told him "You’re crazy" and that "You don‘t know what you‘re talking about"!!! Perhaps she understood and appreciated our words, after all. But another thought also did run through my mind... how forever grateful I am to this boy for bringing to our attention Caitlin's feelings of guilt.

It has been several months since I’ve last written in this journal. To say the least, the lack of something to write about in regards to Caitlin’s health has felt absolutely wonderful! Although Dan and I will never be ’comfortable about Caitlin’s health’ and we will always search for signs of anything sinister, we are at least at a place where we can breathe (and I no longer have to check to see if I am dressed when I walk out of our front door). We know that many, many parents would give anything to be in the place we are right now.

And in closing, I am now asking for prayers for a certain young lady... the beautiful Brianna. One week after attending Camp Jornada and having the time of her life, Brianna was again diagnosed with Cancer. She and her family were told that additional treatment would be of no help. Although Science now offers no possibility, the magic of prayers and miracles still do. Please remember Brianna and her family in your thoughts and prayers. I would also like to acknowledge the passing of yet another, beautiful child from Cancer... the young boy Brant. Prayers for his family are needed here, as well. Like a thief in the night, Cancer continues to steal the lives of our beloved and innocent children.

Thank you for checking in on Caitlin tonight. Your good thoughts, well wishes, and prayers are always welcome!

***UPDATE***

It appears that another miracle is on the horizon. Brianna and family are in Texas... and she is going through treatment. Our own beloved Dr. Anderson is caring for her!

Thursday, August 18, 2005 7:11 PM CDT

What started off as one of the worst weeks in my life has ended up to be one of the very best. My Mom is just fine... and I can't tell you how grateful I am to the very core of my soul. The sudden medical emergency with her proved to be the 'straw that broke the camel's back' in my world; the chance of perhaps losing this pillar of strength who has walked me through every step of my life (and Caitlin's) was just something I could not bear or handle. I am now happy to report that Mom's second surgery was a total success and that her diseased artery was skillfully bypassed with an artery taken from her leg. It is absolutely amazing what modern wonders can be performed today. Although Mom has some weakness, with physical therapy and time hopefully this will subside. Given her brush with death, Mom now seems to have a new lease on life... and she speaks with a kind of a glee that wasn't present before. She has said that “Now I can refer to myself as a miracle --- just as my granddaughter is“!!!

Although I had contemplated canceling Caitlin's Mayo appointments, I am so grateful now that I did not. She had another wonderful report --- perhaps even better than the last! Dr. Boyce from Immunology was absolutely thrilled with all of the progress Caitlin has made! He carefully reviewed all specialty blood tests done over the past several years and informed me that although she only just makes the low side of the scale on some things, Caitlin's immune response is in fact present. Dr. Boyce said that "It's entirely possible Caitlin may never have a totally normal immune system, but her immune system is doing what it’s supposed to do". He concentrated quite a bit on the fact that Caitlin (along with her donor's stem cells) is now producing IgM --- a component of the immune system that was barely present prior to the stem cell transplant. This component is not something that could ever have been infused into Caitlin (such as through IVIG) --- this is something her own body is producing! Dr. Boyce also informed me that some pretty fancy blood work was done to test her immune response to various bacteria and the likes --- and that she passed the tests! Caitlin has now been taken off of Bactrim (a medication she’s been taking since the year 2000) and she has also been taken off of IVIG (infusions she’s been receiving since the year 2001)!!!

I believe I was in a state of shock at this appointment --- I could barely believe what I was hearing! Caitlin off of IVIG --- this was too good to be true! Dan and I had been told she would need this for the rest of her life!!! It was so hard to grasp that this product she has so desperately needed was no longer necessary! IVIG infusions have taken quite a chunk of our lives --- drive times to and from Mayo, hours in the infusion center, and then hours of quiet time after for fear of reaction. Caitlin's infusion previously scheduled on Saturday was even cancelled! And although money is way down on the scale of important issues and our daughter's needs have always come first, being off of IVIG is like giving Dan and I a raise --- this product referred to as 'liquid gold' has cost us $300 out-of-pocket each and every month for the past four years!

After relaying all of this wonderful information, Dr. Boyce then gave Caitlin a stern talking to about 'risk taking'. He was extremely serious about this and I could tell that his words came from the heart (and from experience). He spoke of children having lived through life-threatening conditions and said that "Caitlin has certainly experienced this several times". He went on to say that children who have survived these experiences and who have come so close to death seem to later have a sense of "I've lived through it, I've survived, and I'm therefore invincible". Dr. Boyce said that Caitlin is now of the age that he has seen other children who have had close calls with death wildly rebel and start taking extreme risks with their life; he also specifically mentioned taking drugs and having sex. Dr. Boyce reported that this is a common reaction to what the child has lived through and that the child needs to realize where these risk-taking behaviors stem from. I am not sure Caitlin appreciated these words to the depth that they were intended, for she told Dr. Boyce “Please, I would never...”. But Dr. Boyce’s words are now etched upon my heart and they will not be forgotten. There will be many discussions along these lines in the future.

I had had questions to ask Dr. Boyce during this appointment but in the long run and in the happiness of the moment, I forgot to ask. I now realize how silly it would have been to have even asked such questions, for no one has a glimpse into the future... and no life comes with a guarantee. In the grand scheme of things, the only factor of importance right now is today --- and that Caitlin is still with us, she is happy, and she is healthy.

During our free day in Rochester on Saturday, Caitlin and I spent a wonderful day together. We shopped for school clothes, went to many garage sales, and revisited places we tried to enjoy last year. During the course of the day, I could not help but notice that I have a new child this year (I remember so vividly last summer when Caitlin could barely walk... and how she would sit down no matter where she was just to rest). This weekend I noticed she is running again... and it has been many, many years since she has done this! I asked her about it and she nonchalantly answered “Oh I don’t know when I started running again, it was a while ago”. She later had a question for me, “Mommy, when was the last time I threw up?“ and I really had to think about it; I finally answered that she last threw up in February. These things that may perhaps be taken for granted by others have such a tremendous impact on our lives (and it‘s so wonderful to move past them). Once again, I can only say “Be still my heart”.

On Sunday, I dropped Caitlin off at Camp Jornada; within moments of arrival Caitlin was sporting her new camp t-shirt and bandana (standard attire for cancer kids). It was so obvious how happy Caitlin felt to be 'amongst her own'. Although I’ve been with her through thick and thin (and always will be), I recognize that I will never truly understand what she and these special children have been through; I will always be an outsider looking in. But Dan and I can certainly appreciate that with ‘membership in the club' seems to come acceptance, joy, and laughter and love of the day beyond words. She will be full of wonderful stories upon her return home.

It appears that now would be the perfect time to end this journal (and I‘m sure you’ve all realized and appreciated how I‘ve yearned to do this). Caitlin is doing so very well, we're getting back on our feet, and our life has re-settled into our own sense of normalcy (and we don‘t have to return to the Mayo for three months!). We will always pray for and have tremendous hope for Caitlin's future. In wishing we could put all the bad times and the thoughts of cancer behind us, we also realize that this is just not possible. The struggles have made us who we are today and the bad times and worry of cancer will always be an integral part of our lives (I don't believe you could find any parent in the world that is without worry over their child who has had recurrent cancer). For quite some time I have said that “Caitlin would be perfect if not for her health”; I have finally realized that Caitlin would not be who she is today if not for her battles for life. She is perfect... and just as God intended her to be. And Dan and I will never be arrogant enough or comfortable enough to believe that Caitlin does not need continued prayers. So in trying to close this journal I find that I cannot... for I don't want you to forget her. I will write when anything ‘out of the ordinary’ occurs... and in the meantime and without any updates, please trust that your prayers are continuing to work.

God bless you for loving our child as we do. And many heartfelt thanks for all that you have done --- and given us!!!

With much love,

Janine

Wednesday, August 10, 2005 9:35 PM CDT

Last Friday, my mother went to her hairdresser's as she has done for many, many years. Although Mom said she felt fine, Pam noticed that she wasn't walking quite right; Pam insisted and saw to it that Mom got to the emergency room right away. Thank goodness for this fine woman... for she saved my Mom's life. One of the doctor's said, "You got her here just in time”. After many long, arduous tests (that are still even continuing), it was determined that my mother has had five mini strokes (called TIA's) over the past few weeks. A total blockage was located in her carotid artery and we were told Mom has had no blood flow to the right side of her brain (which controls the left side of the body). She was transported by ambulance from the local hospital in Manchester, NH to the Lahey Clinic Medical Center in Burlington, MA where today she underwent an Arteriogram; later a repair was attempted on this artery, however the blockage was unbreakable. Mom is now scheduled for a bypass of the artery on Friday.

It is hard to understand how Mom had these TIA’s without realizing it. At first I thought perhaps she was just so excited that Caitlin was with her, she perhaps ignored some warning signs. But what I have learned about TIA’s is that the effects are temporary and that they dissipate sometimes after only minutes. What a frightening thing. Mom has been through quite a lot, but she has done it with a wonderful attitude and a tremendous amount of courage and strength. Today she told me that she keeps thinking of Caitlin and all the tests and surgeries she went through... and how Caitlin is just fine now. These thoughts keep her upbeat --- and that is truly a blessing and quite an honor. It has been an emotional week and I can't tell you how worried we have been for this woman that is so needed and loved! I have also been extremely frustrated in that I’m so far away and because of our situation I’ve just not been able to be there for her. Thank goodness for my two sisters, who have not left her side...

Caitlin has handled the news of Nana‘s medical condition as best she can, but she truly has not been herself this week because of the worry. Yet Caitlin has also been very encouraging while talking with Nana and she has even offered words of wisdom --- “Don’t give up your fight for life” and “You’ve got to fight for every day”! These are revered words, I know, that Caitlin speaks of from experience. But amongst all the seriousness and severity of the situation, the two of them also couldn’t resist a little humor... and they joked briefly about "Nana only having half a brain while Caitlin was there”. Although I was horrified and definitely DID NOT THINK IT WAS FUNNY, this joking was just meant to keep spirits up --- and to keep the humor going even through the adversity. Oh heck... maybe it was just due to nervousness about the situation.

While I have thought long and hard about canceling Caitlin’s pending Mayo appointments and have felt all week that I should fly home, Mom wouldn’t hear of it. With hesitation, I guess Caitlin and I are Mayo bound on Friday.

For all of you that so lovingly check in on Caitlin, please help us with prayers for Nana Elliott’s continued strength and her recovery. Your prayers have always worked --- and right now they‘d be appreciated so very much!!!

Wednesday, August 3, 2005 8:44 PM CDT

Caitlin has returned from a wonderful vacation spent with my family. To say the least, she was 'spoiled rotten' while there! She visited with cherished family and friends, spent quite a bit of time swimming in Auntie Karen's pool, re-visited favorite spots, shopped 'till she dropped', went for nightly walks with Nana Elliott, and enjoyed her fill of lobster and heavenly baked goods almost each and every day! All that saw Caitlin were amazed at how well she looks! I’ve heard several times that if her history wasn't known, none would have guessed how sick she'd been (words that are music to my ears)!!! And although my Mom had been apprehensive about her care (giving medications, the recent g-tube removal, the possibility of an emergency, and the likes) all went really well and the time spent together was only thoroughly enjoyed. Caitlin has promised to return each and every year (and perhaps Dan and I can tag along next year)!

During the week she was gone, I spent quite a bit of time thinking about the fact that Caitlin has once again come full circle. At her last visit to Nana Elliott’s in the Summer of 2003, Caitlin was just beginning to suffer from another Lymphoma; shortly thereafter she was to face yet another battle. Her recent visit came at the close of the battle and at a time when she has truly and finally gotten well. I can only say... AMEN TO THAT!!!

While we continue to bask in the glow of Caitlin’s last Mayo report, we are now readying ourselves for the next visit. Caitlin is to be seen in the Department of Immunology a week from this Friday and after this appointment she is to follow up with Oncology (just to let Dr. Khan review what the Immunologist reported); Caitlin will be infused with IVIG on Saturday. It has been many months since Caitlin was last seen by her Immunologist, and Dan and I are hoping to get some information regarding her recovery from last year’s Stem Cell Transplant. Of course I have questions as usual --- specifically: ‘Why is her immune system taking so long to recover‘ and the really big question ’Has she responded well enough to the transplant and does she have enough Lymphocytes and immune response to be considered no longer susceptible to Cancer’? This last question may seem like the craziest of things to ask because of course Caitlin could very well be diagnosed with Cancer again just due to the fact that she’s already had a Primary and Secondary Cancer. But we are impatient for total release from an earlier prediction given at the time of her diagnosis with a Primary Immune Deficiency Disease; at that time we were told Caitlin was “Susceptible to Cancer” and that she will “Succumb to one type of Cancer or another at some point in time”. Certainly we can’t be blamed for rushing ahead with questions and wanting to be purged of that prediction?

Following these clinic visits, I will be dropping Caitlin off at Camp Jornada (the camp for children affected by Cancer); camp will begin on Sunday and draw to a close on Friday. Caitlin is thrilled to be attending this camp again this year!!! Last year Caitlin had tremendous fun and she made so many lifelong, cherished friends and wonderful memories. This year’s session promises to be even better!!! And I have also heard rumor that our own beloved Dr. Anderson will be returning from Texas for the week of camp! The games, once again, begin!!!

In view of the fact that a new school year is soon to be upon us, Caitlin tonight is reviewing her wardrobe and assessing which clothes no longer fit. I am happy to report that Caitlin has outgrown many of the articles of clothing she has worn over and over during these past several years! Dan and I have always said we’d be thrilled to replace her wardrobe as often as needed --- and this year it’s really happening! Caitlin is finally growing!!!

Thank you for checking in on Caitlin tonight!!!

Tuesday, July 19, 2005 7:46 PM CDT

We have just returned from one of the best Mayo visits we’ve ever had. I am ecstatic to be able to say that Caitlin had an outstanding report this time and that she remains cancer-free!!!

Quoting the radiologist's words who reviewed her full-body CT results, "Liver, spleen, gallbladder, pancreas, and kidneys are negative. The bowel is negative. No abnormal masses or significant lymphadenopathy identified. Minimal residual fibrosis in the lingula and left lung base adjacent to the heart. The lungs are otherwise clear with no abnormal masses or pleural fluid. Mediastinal structures are normal. Normal sized axillary lymph nodes. Remainder of exam is negative". Key words here are no abnormal masses, normal sized lymph nodes, and minimal fibrosis in the lungs! Honestly, we couldn't ask for more!!!

Other matters of importance to note are that Caitlin has in fact grown 3/4 of an inch since March; she now stands 51 1/4 inch high and weighs 55.4 lbs. Her Pulmonary Function Tests, while not perfect, did show improvement. Dr. Khan even declared "I can't hardly recognize you, Caitlin, from listening to your lungs! There is nothing to listen to!" Dr. Khan additionally said that Oncology will now only need to see her every 4 - 5 months (although we will still have to return to the Mayo frequently to visit Endocrinology, Gynecology, Immunology, and for IVIG infusions); but for Oncology to loosen the reins is absolutely astonishing!

Given all the above good news, Dr. Moir finally relented and agreed to allow Caitlin's feeding tube to be removed. Yes, the last of her tubes and the last of the reminders of her 2nd battle are now gone!!! Prior to the removal we were given a talking-to about "No promises for the future", but that has always gone without saying; we don't need any reminder of that fact. The important point now is that the thing is gone --- and with it hopefully goes the worry of yesterday. I cannot express how happy Caitlin was at that moment when her g-tube was removed; her guess going into the appointment had been that the tube would stay. What a wonderful and joyous surprise for her! As we were leaving the surgical floor, Caitlin began singing (and quite loudly, I must say) the song from the ‘Lion King‘, "Hakuna Matata! What a wonderful phrase. Hakuna Matata! Ain't no passing craze! IT MEANS NO WORRIES, FOR THE REST OF OUR DAYS. It's our problem-free, philosophy, Hakuna Matata!"

Caitlin and I also later talked about the procedure suggested that when she is older and perhaps self-conscious about her g-tube scar (an exact circle --- similar to a paper punch hole), Dr. Moir could surgically change that circle into a line. Caitlin very adamantly told me that, “What it is, is what it is. I won‘t be interested in any more surgery or changing what I‘ve got”. What a kid; Dan and I admire her in more ways than words could ever find. I can certainly understand how she could care less about any old scar; battle scars are something to be proud of and are left to remind you of the fight. And of course Caitlin realizes that she's had more than enough surgeries to last a lifetime. Since the g-tube removal, I have noticed that Caitlin periodically feels her belly --- perhaps to make sure it’s still flat or perhaps to check that the past few days have not been just a dream. Right now she is so extremely happy --- and that is what it’s all about.

Next month Caitlin will revisit with Immunology and Gynecology. I had asked during this visit about Caitlin’s blood work --- which continues to show that her t-cell and b-cell function are off. Dr. Khan calmly explained to me that due to transplant, some function is slow to recover. “It’ll take some time” were her exact words. She made me feel that everything in Cait’s world is just exactly where it is supposed to be (of which I have no doubt). Dr. Khan further said that she would like Immunology to reassess whether Caitlin needs to continue on Valtrex, Bactrim, and IVIG at next month‘s visit. Be still my heart.

Although this journal has never been about Mom and Dad (as intended), I do want to say that we have now finally ‘PAID IN FULL’ Caitlin’s first battle with cancer. This is an achievement we never thought we’d ever attain! Whereas we now begin payment for the 2nd fight, we’ve no doubt we’ll get there too --- just as Caitlin has gotten past her 2nd battle. What a wonderful thing.

This week will be busy, with packing and readying for Caitlin’s main Summer event --- New Hampshire!!! In her life, I’ve never seen this child happier! All is really well!!!

Bless you all for continuing to care so much about our child. We thank our lucky stars for the prayers you continue to send our way!!!

Thursday, July 7, 2005 8:14 PM CDT

Dan will be returning to work on Monday after a 7 week 'hiatus'. The doctor reported that he has healed amazingly well after such a severe break! While I'm a bit concerned how Dan will fare in full-duty status after all this time of doing nothing, we are happy that our lives will once again get back to some semblance of normalcy. Dan and Caitlin have certainly enjoyed their time together; most nights they played video games together into the wee hours of the morning (a luxury not previously afforded them)! As for me, I am thrilled to be relinquishing my lawn-watering detail!!!

Caitlin is doing terrific, and she has been thoroughly enjoying her Summer vacation. This girl is always on the go --- and her energy level is absolutely amazing!!! She has just now returned from a day in the sun at 'Wacky Waters' with her cousins, aunt, and uncle. She was home all of ten minutes --- and then was off again to play! Recently one of her best friends moved into the house directly behind ours, much to Caitlin's delight!!! There seems to be constant activity in our home from sun-up until much-later-than sundown. What an incredible difference from last year.

Her last appointment at the Mayo went well, although it was noted that Caitlin had lost two pounds during the previous 4 weeks. Dan and I were initially very concerned and I admit we did think ‘cancer’. But after a time we realized that given Caitlin’s increased activity, it stood to reason that she would shed a few pounds. Since then, however, we have been watching her eating habits very closely. This child cannot stand to lose any more weight.

We will return to the Mayo the week after next for scans and all the usual other tests. Although Caitlin hasn’t been promised anything, she does in fact have an appointment scheduled with the surgical staff for a ‘consult’ in regards to the g-tube removal issue. We hope things work out as Caitlin wishes, but irregardless of what happens we will not doubt the wisdom of her medical team.

After 3 1/2 days in Rochester, we will return home for 3 days and then drive Caitlin to Chicago where she will then fly to Manchester, NH to visit my family. I cannot express how excited she is for this event!!! I know my Mom is a bit concerned; the last time Caitlin visited the cancer had returned (unbeknownst to us at the time). In fact, at that last visit Caitlin was full of tumors. I of all people know how hard it is in getting past memories such as these. The only comforting words I have in this respect is that we have to hope for her brighter future and not let worries get the best of us --- for Caitlin‘s sake (words I will need to remind myself of for the rest of my life).

Caitlin’s course of Estrogen continues. While we haven’t noticed any significant growth, it is surely evident that Caitlin now has a definite ’teenager attitude’. This child now even stomps her feet when angry! Although she does return to the child we once knew from time to time, these moments seem to be fewer and farther between. But we are only happy that she is now entering into what is considered a normal phase; perhaps the much-needed growth phase will follow.

It has been many months since Caitlin was last hospitalized. In fact, it seems that this is the longest span of time in between hospitalizations that Caitlin has ever had! We also notice that she has not had ringworm, pinkeye, or allergy symptoms at all this year (and these particular bothersome infections have come every Spring and/or Summer for as long as we can remember)! It also seems that we have seen the last of her 'thrush'. Caitlin herself has even said that “I have more strength now than I’ve ever had”!!! We are believers. Caitlin also has not had any difficulty in breathing nor have any symptoms that previously plagued her returned. Dan and I continue to hope that she has been cured from her susceptibility to lymphomas and infections with last years’ stem cell transplant. Of course our prayers continue, as well.

Thank you all for continuing to check on Caitlin’s progress. She is getting there!!!

Wednesday, June 15, 2005 4:34 PM CDT

We've all read and worried about them ~~~ medical errors that caused injury and sometimes even death to patients. Given the tremendous amount of health care needed nowadays, the rush to accomplish more in an hour, and the complexity of the issues, medical mistakes are not even surprising. "To err is human"... and physicians are, after all, only human.

Over the course of Caitlin's medical journey, I cannot honestly say her care has been 'perfect'. My goodness, I think back to when she was being treated for 'Crohn's Disease' at the University of Iowa Hospital when in all actuality she had Cancer! Throughout her care, there have been many times that we considered ourselves blessed to have helped make the right decision for her; decisions that ultimately saved her life. At all times we have known and been reassured that we are guided by the good Lord above.

A few weeks ago, Caitlin had what we are now referring to as a 'Near Miss'. She had been scheduled for another round of vaccinations, a round that is normally given to 14-month old infants. Earlier in the day, Dan had taken a call from the doctor's office requesting rescheduling of Caitlin's appointment (due to a death in the family of our regular physician). Dan had emphatically said 'No', knowing the importance of timeliness. He said that after all it’s the nurse that gives these shots!!! Caitlin’s vaccinations had previously been arranged by the Mayo and set up at our local physician's office ~~~ at least we had thought it was only this simple!

Upon our arrival at the doctor's office, we waited quite a long time. Finally we were brought into the examination room and the nurse asked Caitlin “Ok, are you ready?’ For some reason I interrupted the process and asked the nurse “So can we just review what Caitlin is being given today?” I had carried the Mayo orders with me (taken off of our refrigerator at the last minute) and wanted to check; for a second there I had even thought I might relax a bit and not ask this question. The nurse responded that Caitlin was receiving her Diptheria, Pertusis, & Tetanus, the Hepatitis B, Inactivated Polio, and the Measles-Mumps-Rubella (MMR). I said that NO, there was something not right; Caitlin was also to receive her Hib conjugate ... and that she was NEVER TO RECEIVE A LIVE VACCINE SUCH AS MMR!!! The nurse then attempted to explain that the doctor ordering that day's vaccines had thought Caitlin did not need the Hib and that a MMR was definitely in order... the nurse exclaimed that she had tried to tell the doctor that Caitlin was under specific instructions; she also blurted out that the doctor did not listen. She went on to say that as a nurse she could never go against a doctor's orders. We abruptly walked out ~~~ leaving those four needles on the counter, thankfully untouched.

Over the course of that evening, I cannot explain the depth of the feelings Dan and I were having. Had Caitlin received that live vaccine, she could have possibly died. We thought back to her fight with Chicken Pox and her closeness to death at that time... how for several years we had carried the guilt of her many scars because for some reason we had decided not to let her be vaccinated against Chicken Pox. We will also never forget the day years later when our guilt was absolved; the day we were told that because of Caitlin's Primary Immune Deficiency Disease she should never receive live vaccines because of the possibility of death or serious harm. Even with her Stem Cell Transplant, she is never to receive live vaccines. The day of the near miss, I kept thinking over and over... what if I hadn't taken the time to ask about those vaccinations???

The next day we returned to the clinic when our regular physician was there. After spending quite a bit of time discussing what had happened the day before, Caitlin finally received the vaccinations she was supposed to. I was extremely angry at the nurse, for she did personally know Caitlin's history. I asked her if she would have given that shot and she answered that “Yes, I would have”. She tried talking again about going against a doctor's orders and that it was not her place. I very curtly explained to her that it was her place to speak up if she knew in her heart a doctor was doing the wrong thing and that the wrong would cause serious harm. I told her I was angriest at her. She said no more, nor did she apologize.

The doctor that day of the near miss had not taken the time to even 'breeze' through Caitlin's file. Such a simple thing... and a small thing you think would be required, yet this doctor had not wasted the moment. I am sure the nurse did fight with the doctor about the vaccinations --- yet even without this argument the doctor should have realized that a child 13 years of age receiving vaccinations that are normally given to a 14-month old infant CERTAINLY HAS A MEDICAL HISTORY WORTH LOOKING INTO!!! The moment not taken could have cost a life.

We have not lost faith in Dr. Huettman. He has been there with us through thick and thin. The doctors he works with are not part of a 'team'; they only work within the same walls. Dan and I realize that we must never visit that office again unless Dr. Huettman is there. We also realize that we were a part of the problem that day... and that we must never hurry Caitlin's care. We must also never relax on our vigilance of the treatment our precious child receives --- not even for a moment.

All else is well. Caitlin quickly recovered from her week of feeling faint, and we believe now it must have been caused by the first few truly hot days of the season. This has never happened to her before, but differences such as this are evident since the transplant (like her change in food likes and dislikes!). School is now done for the year, and Caitlin will return in the Fall as a 7th grader. She recently quietly announced to us that "Someone else (a boy) is the new class clown". Although we have always appreciated her humor and have known that this has helped her through the battles, saying goodbye to her title as the class clown is not something we will truly miss. We are very happy she is serious about her schoolwork... and so pleased at how well she did throughout the year! Honestly, we never expected her to receive honors ~~~ but we are thrilled that she did!!! Caitlin also recently told us that she has broken up with her boyfriend. Although he was a good kid, Caitlin just didn't seem to want to be bothered with the whole thing. Our hopes are now for the Summer Caitlin has ahead and we are praying that it is wonderful for her. This will be her first true Summer 'off' in many years.

Dan’s ankle is healing nicely, and we have thankfully received the news that he does not need surgery. Yesterday he was 'promoted' into a walking cast --- proof that he is making progress! In the meantime, Caitlin and I are waiting on him hand and foot (no pun intended)!

We are Mayo-bound this coming weekend for Caitlin's normal IVIG infusion. We are also still awaiting word of her upcoming July appointments ~~~ and whether or not the g-tube will be removed. Caitlin is eating extremely well now and it has been about 6 months since we've fed her via tube. It seems appropriate to remove the thing! But obviously her physicians are having a difficult time deciding... and I am hoping the trouble is not in some belief they have of Caitlin's cancer returning. As you can tell, I'm getting a bit anxious about the whole thing.

Wednesday, June 1, 2005 9:34 PM CDT

The debate in our country regarding stem cell research continues. Dan and I seem to be drawn to each and every article written and to each and every news report on this subject. Through each we are brought to tears --- because from our point of view there clearly should be no debate whatsoever... nor should there be any question. There are so very many people in this world suffering from horrible diseases that could potentially be cured! The possibility of 'major medical breakthroughs' should be reason enough to pursue this type of research! And of course we think of our own child... knowing that the stem cell transplant Caitlin had last year was her final chance at survival... and of course we realize each and every day that this transplant still has the possibility of failing. We also appreciate that it is a very real possibility that Caitlin would perhaps benefit from an embryonic stem cell transplant to continue her fight in the future. We can only realize that precious time is being wasted.

I need to make a correction to a statement I previously made about the recent fundraiser for the Leukemia & Lymphoma Society. I had said that Katie Taube raised over $3,000 for research... but in truth she raised over $4,000!!! Because we had donated to the cause, we received a 'Thank You' and learned of this big difference! Katie also wrote in her note... "My Honor Patient Caitlin continues to do well in remission. I'd run another marathon to make sure it stays that way!" We know in our hearts that this is true.

Caitlin has again been contacted by the Leukemia & Lymphoma Society and has been asked to be Honoree for the upcoming ‘Light the Night Walk’ here in the Quad Cities to be held this coming September. We were told that the Society wanted "A tough cookie that can show how to kick cancer's butt" and that "None show it better than Caitlin". My goodness, how could you say "No" to something like this??? Caitlin has wholeheartedly agreed.

We are still anxiously awaiting word about Caitlin's upcoming Mayo appointments next month, specifically the possibility of g-tube removal. I have just called the Mayo today to check and was told that the doctors were contacted several weeks ago regarding this, but as of yet there has been no decision.

Because we have not used her g-tube for several months, last week I contacted American HomePatient and asked that they pick up Caitlin's IV pole and her food pump (we have rented this for so long!). I was informed that our insurance company purchased these products (without our consent) for us several months ago! While you may think this is a good thing, let me tell you it is not!!! I was informed that we are to keep these products for the next five years and that our insurance company will not purchase similar products for us during this time. I tried to explain that once Caitlin's g-tube is removed this time that she will never have another again (because she has too much scar tissue there) and that the food pump will be no good to us. I also explained that these type products are constantly upgraded and that the pump we have now will be obsolete in a year or so. I asked if we could donate it to a child who is on the waiting list for a portable pump (if you remember, without a portable pump a child has to stay connected to 'the wall' and that there is a long waiting list for these type pumps); I was told "No". I can't tell you how upset we've been about this whole thing and how wrong we think our insurance company was. I am sure I don’t need to repeat my words of that day, as I know you can all imagine. A friend has suggested we turn the IV pole into a coat rack... if we weren’t so ’committed to the thing’ for the next five years I’d much prefer throwing it away so we wouldn’t have this reminder of things that we hope and pray are ‘past‘!!!

Caitlin is so excited about her upcoming Summer vacation. Each and every day she calls my Mom and my sisters and only wants to talk about what they will be doing during her visit to New Hampshire. The plans are always the same, yet Caitlin delights in the same talk day after day. She asks --- “Can I eat lobster every day?” and she is assured that “Yes, you can!” She also wants to talk about where they will go, what they will do, about Auntie Karen’s pool party planned for her, and can she collect sea shells at Hampton Beach? I have never seen her so excited about anything in her life!

We are so hoping that all works out as planned. Caitlin continues under restrictions due to transplant --- specifically, no swimming in lakes or oceans, no walks in the woods, and no contact or digging in dirt. One of Caitlin’s favorite pastimes in New Hampshire has been swimming in the lakes that her Mom swam in when she was a child. We are hoping that these restrictions are lifted prior to her upcoming visit --- so she can just do whatever she wants to do!!!

A new change in our household is that Dan is home for the next few months. While out having fun (and he’s had so little of this these past few years), he had an accident and broke his ankle. While his being out of work is not a thing that we needed right now, we have been through much worse. As long as he will be okay, we will get through.

I would like to report that Caitlin has been in good health and that there have been no complaints, but this past week she has not been feeling well. It’s been up and down... sometimes she feels good and at other times she does not. She complains of fatigue, nausea, feeling faint, and just generally not feeling well. I have no idea what this is all about. We are hoping that her sick feeling is perhaps due to the change of seasons, perhaps her new meds, or some other type ‘normal illness’. In all actuality, we have no idea what is going on. We tire of the worry and the stress, but trust that we are just exactly where we are meant to be. And we take very deep breaths that what is going on with Caitlin is just a normal, everyday occurrence. I don’t believe there will ever be a day that we don’t worry about cancer.

In closing, I would like to ask for your prayers for a friend of ours, Jim. He has been battling Leukemia for these past few months and he is now going through conditioning prior to Stem Cell Transplant. I believe this man was inspired by Caitlin’s story --- he and I spent a great deal of time talking about her! When I mentioned today that Caitlin set a record during transplant and was discharged from the PICU after only 6 weeks Jim said he would try for only 5 weeks!!! I’m saying lots of prayers that he breaks Caitlin’s record and I hope you will too!!! Please continue to keep Jim in your prayers as he approaches transplant on June 6th.

God Bless.

Janine

Saturday, May 14, 2005 7:38 AM CDT

Caitlin, once again, enjoyed the celebrity status that followed her broadcast on our local news channel. Many friends, parents, and teachers referred to her as "A star!" and some even asked Caitlin to autograph the picture that appeared in our local newspaper; she happily complied. Our phone rang 'off the wall' for days; Dan and I were told many times that Caitlin's (and Katie's) story was truly inspirational.

I was also asked if Caitlin had now become a "Poster Child" and after brief reflection I had to answer that "Yes, I suppose she has". Although this question and the reality initially brought a twinge of sadness, I am now only proud of this fact. Carol T. from the Leukemia & Lymphoma Society had once told me, "It's important to put a face on the disease" and I can only agree that Caitlin's bright and cheerful attitude while the story of the horrors she went through was told contributed to the success of the event. We are so proud of our daughter for her willingness to participate in this story. Whatever it takes to raise money for a cure!

Caitlin continues to do extremely well. Amazingly enough, her course of Estrogen seems to already be triggering some mild changes! Each day Caitlin carefully checks her height --- and if the scratches on our kitchen wall are correct, she has in fact grown! She additionally has had some complaints of mild aches and pains which we believe are normal growing pains! Her body truly must have been craving this product --- and to do what it is supposed to do!

The last weeks of school are finally winding down. Caitlin’s grades have continued to be excellent; she will be part of the select group to be honored at Williams Intermediate School during an upcoming ceremony. She is looking forward to Summer --- and to her visit with my family in New England and another week’s stay at Camp Jornada. Both she and her friend Jessie have already asked that they be assigned in the same cabin again this year!

Our monthly, weekend visits to the Mayo continue for her necessary IVIG infusion. Her next scheduled ‘hefty’ appointments are in July and will include visits with Oncology, Immunology, Pulmonary, full body CT scans, and specialty blood work to see if she has built up antibodies from the vaccines recently given her (she will also be receiving another series of vaccinations next week). We are also anxiously awaiting word whether or not she will finally be scheduled to have her g-tube removed. If all works out as hoped, Caitlin will at long last be free of all the outward reminders of her last battle with cancer. She will also be free of the remaining restrictions placed on her due to transplant. There’ll be no stopping this kid now!!!

Friday, May 6, 2005

Caitlin is in the news again! Visit www.whbf.com to read (in Katie's own words) what it meant to her to run in Caitlin's honor --- and to be part of a group of very fine people who together raised over $600,000 for the Leukemia & Lymphoma Society!!!

May 1, 2005

For the past several months, our friend Katie from News Channel 4 has worked very hard on behalf of our daughter ... and for all of those who suffer with blood cancers. But today will be Katie's hardest day, for this is the day she will be fulfilling her promise --- and there is no doubt that Katie will complete what she set out to do. This determined woman has not only successfully raised the monies (over $3,000!) she intended to... Katie will walk away a winner. She will always know that her strength and endurance has contributed greatly to a terrific cause; this money raised will be given to the Leukemia & Lymphoma for research and will unquestionably help so very many! I can only imagine the end of her day today and the tremendous feeling of accomplishment she will have! Thank you, Katie ~~~ from the bottom of our hearts!!! And many thanks to those who contributed so generously to this wonderful cause!!!

From us to you Katie... YOU GO GIRL!!!

Tuesday, April 26, 2005 8:59 PM CDT

Last week I unexpectedly received a phone call from the Mayo informing me that Caitlin needed to be seen in the Pediatric Obstetrics & Gynecology Department, a visit that had been recommended by Dr. Schwank. I was told that the doctors in this department would be able to help Caitlin with her course of Estrogen and to help her grow. I was assured that the doctor Caitlin was to see was "world-renown" for her care in the handling of children. But needless to say, I was horrified and worried for Caitlin --- and thought that this was the ultimate indignation my child would have to bear. I prepped Caitlin for this appointment while also making light of it, but as Mom I worried sick about it throughout the week. A friend told me that given all that Caitlin had been through, truly this exam perhaps would be the least painful of all.

My worry was wasted time. We have just returned from yet another few days spent at the Mayo --- and I’m happy to say that all went very well. Caitlin received her usual IVIG infusion (she had no reaction), and she was also seen by two doctors in the Pediatric Obstetrics and Gynecology Department. She additionally had some further specialty tests and an ultrasound of her abdomen and ovaries done. The OBGYN doctors were absolutely wonderful and spoke with Caitlin on her level. Caitlin was also asked if she wanted me present during the exam, but she exclaimed that “Of course I do!” The tests and exam, thankfully, were not as ’invasive’ as I had envisioned. Caitlin also weighed in at 56 1/2 pounds and has finally achieved the height of 51 inches.

Hours were spent at this OBGYN appointment reviewing Caitlin’s history and discussing the pros and cons of Estrogen, but in the end Dr. Higgins said that the benefits far outweigh the risks. I was horrified to learn that if Caitlin’s body did not get this product, she would not be able to “build bone” --- and that she would suffer from Osteoporosis and numerous fractures beginning at a very, young age. I was assured that by beginning Caitlin on low-dose Estrogen (10 micrograms initially), the normal pattern of growth and puberty would be replicated. I was also told that any growth Caitlin would have achieved on her own would not be prevented by Estrogen --- it would only be enhanced. Caitlin will be on Estrogen until she is at least 18 years old --- and she may need it for the rest of her life; Progesterone will also be added in the future.

Caitlin has already begun the product, and we were told we may see some changes in as little as two months. While Dan and I have always looked forward to seeing our daughter grow into the young adult and woman she is meant to be, we are nervous about it too. She has been the same for so many, many years --- this grown-up person stuck in a little person’s body. But now it seems we are almost guaranteed she will reach puberty... and will grow as she was meant too. I can’t exactly pinpoint what scares us the most, but it’ll be a change and this is always a bit difficult. What if I can’t carry her around on my hip anymore? But we are very happy that Caitlin will be doing just exactly what she is meant to be doing.

Since I’ve last written, we have also received the written reports from the Mayo with the results of Caitlin’s recent specialty T and B cell tests. While Caitlin’s Lymphocyte count is thankfully up to 2.12 (and now within a good range), other things are certainly out of whack. We were surprised to see that Caitlin’s B-cell count is very high while the T-cells remain on the lower side; additionally, helper T-cells are very low. There is no question that Caitlin is still recovering from transplant, treatment, and her Primary Immune Deficiency Disease. But I am also happy to report that Caitlin’s DNA is 100 percent donor --- and that there is no trace of her own DNA. It’s mind boggling, when you think of it. Caitlin is analyzed in so many ways, I believe we always will have test results or something to worry about.

On a lighter note, I want to repeat the words of one of Caitlin’s teachers spoken last week. I believe these words capture the essence of our daughter to a 't'...
“Caitlin --- you are like lightening! I tell you to do something and you get it done! You are always sitting upright and smiling --- and you are always so happy! You are just like Tinkerbell”!!! The news of these words spread far and fast... Caitlin’s classmates are now referring to her as “Tinkerbell”.

Sunday, April 10, 2005 6:31 PM CDT

I can honestly say that Caitlin is doing terrific! She looks good, she’s full of energy, and she is breathing easier than she has in several years (and she’s even off of steroids)! The Mayo doctors were so right when they announced her lungs were finally clear and no longer thought to be a concern! Caitlin hasn't felt the need for emergency breathing treatments in quite some time! It is a tremendous relief to have her lung condition back under control, as this has been a very long and worrisome course.

We had also been concerned that her appetite would suffer once she was totally off of steroids, but this is certainly not the case. Caitlin continues to eat extremely well! She still will not let me go grocery shopping without her --- she thinks I might forget to buy some of those favorite foods that she just can't live without! Additionally with steroids gone, she no longer has to take Penicillin and Diflucan; her medications are now thankfully minimal. Her liver enzymes should now be within normal range.

Although we still are awaiting the results of her gland tests, we have heard that her bone marrow was absolutely clear and without any abnormal cells. This was wonderful news for the reason that cancer cells frequently show up in the bone marrow. Caitlin has also finally received her first series of childhood vaccinations along with a tetanus and pneumococcal vaccine (I even cried that day, I was so happy!). She did have a reaction of rash, severe leg pain, and fever --- but Dan and I wonder if this is a sign that her immune system and the vaccinations are going to work?!? Her next series of vaccinations will be in two months time.

School is going well for her --- and she has received yet another fabulous report card (5 A’s, 1 B, and two C pluses!). Her report cards continue to be that extra confirmation to me that she really is feeling well. Caitlin is happy that Summer break is just around the corner and I can’t say I blame her --- this has been a long time coming too! Until we know for certain that she has built up antibodies from the recent vaccinations, she will remain under careful restrictions due to transplant --- but these restrictions are fairly minimal, as well. Caitlin will be visiting my family in New Hampshire this Summer and she is counting the days! Dan has also announced that this Summer is going to be “All about fun!” --- be still my heart! It’s been a long time since we’ve had this!!!

All in all, our blessings continue. We are so fortunate to finally be where we are at and to still have our little girl with us!!! There are days now when we can almost even believe that the Mayo has truly cured her... and that she has successfully beat that cancer beast once and for all. As far as those other days, well, we try not to go there. It is a joy that I haven’t felt the need to rush to this journal as frequently as I have in the past; our world seems to finally be calm and there is thankfully much less to report.

We still are most appreciative of the love, prayers, and well wishes from all of you --- Caitlin truly has touched the hearts of many! But I need to mention that there are still many children out there in the thick of the battle and many parents that have lost their child due to disease or illness. Please remember to keep them in your prayers, as well.

Love, Janine

P.S. Just thought I should mention... the other day I finally had the opportunity to speak with the boy that spit on Caitlin a while back. Out of instinct, I just had to speak my mind! I told the boy that I understood he had all ready been punished for his deed, but that I had to further explain to him that his actions were a direct threat against Caitlin’s life. I warned him that if he ever touched or hurt my child again, I would be calling the police. This boy looked at me coldly, said “Don’t even talk to me, f___ you!”, and walked away. For the first time in my life, I was speechless.

Tuesday, March 29, 2005 7:59 PM CST

I have just spoken with Dan --- and am happy to relay that Caitlin's appointments and tests have gone well! They'll be on the road headed home very soon!!!

In brief, Caitlin's organ functions thankfully remain unchanged. I am also very relieved to report that her hearing continues to be unaffected by treatment (as so often is the case). Surprisingly, her lungs sounded absolutely clear (this has got to be a first)! Her blood work was also reported to be very good and Dan was additionally told she is responding, although slowly, to the stem cell transplant. The doctors were happy with her weight of 55 pounds --- and all said that they are impressed with Caitlin's eating! The Bone Marrow Aspirate went as planned, and Caitlin recovered from anesthesia just fine. Although she is hurting now from this procedure, she will recover within a matter of days. We should have the results of this test by Friday.

Dr. Rodriquez from Oncology was very pleased. She also provided Dan with a schedule of childhood vaccinations to be administered over the course of the next two years (yeah!!!); these vaccinations will be accomplished here at home. In four months, the Mayo will test to see if Caitlin has built up anti-bodies from any vaccines received; with anti-bodies shown, they will know that the vaccinations are in fact doing what they are supposed to be doing. Dr. Rodriquez also informed Dan that the Mayo will soon be opening up an 'Immune Deficiency Clinic' to be headed by Dr. Reed and Dr. Boyce; Caitlin will be one of their first patients. We were thrilled to hear this --- especially considering that so few pediatric patients have this condition! And of course Caitlin will benefit from the research and expertise of these very, fine doctors! Caitlin was also able to see and hug Dr. Anderson on his very last day at the Mayo --- at the time he was actually even turning in his ID card!!! From here, our beloved Dr. Anderson is headed to the MD Anderson Cancer Center in Houston, TX where he will continue to help pediatric cancer patients. He will be so missed!!!

Caitlin also had some x-rays and studies done concerning the question of whether she will grow; one of these tests is still pending. Dr. Schwank from Endocrinology also apparently studied her growth pattern and referred to this pattern as "miniscule". He also reported that Caitlin shows no "unusual, abnormal growth pattern" (such as when an extremity is longer than it should be) and said that "her arms are the correct length in comparison to the trunk of her body". He explained to Dan that often times cancer treatment damages the glands that control growth; he feels that this is what Caitlin’s problem is. Dan said that Dr. Schwank pretty much said that Caitlin will not grow without help --- and he then suggested that Caitlin begin on Hormone Replacement Therapy (Estrogen). Nothing was 'set in stone', as the test regarding which of Caitlin's glands is not working is still pending.

Dan was also happily informed that Caitlin would not have to be seen again by Oncology at the Mayo for 4 months!!! Can you believe it??? I never thought we'd ever be given this much of a break!!! This was terrific news --- however, because our local hospital cannot get the IVIG product Caitlin needs she still needs to be infused at the Mayo every four weeks. It was only a brief, happy thought! And if and when Caitlin begins Estrogen, Dan was informed this medication is only available at the Mayo. So it seems some ties are loosened while others are tightened; such is our life! Our Mayo trips will continue...

All in all, it seems this was a very good visit (and much better than the one last month!). Ok --- it's not perfect, but we've never asked nor expected that. This visit was positive! Poor Dan --- I pretty much 'interrogated' him on the phone because of course I always seem to jump ahead. My good husband quietly explained to me that "I'm not as aggressive as you are during these appointments". He also reminded me that "we have to remember to take one day at a time"--- and that "these doctors don't have all the answers right now". What would I ever do without him?

Oh, happy day!!!

Saturday, March 26, 2005 9:22 AM CST

Caitlin is back to her old self and has been doing well. Other than coming home from school ill one day, it has thankfully been a quiet week for us. The day she wasn't feeling well, she almost seemed to be suffering from those old effects of total body irradiation (hard to believe this can still happen after all this time). The only other persistent issue she now seems to have is tenderness, pain, and a little bleeding from the new tube. The tapering off steroids is now complete, and we hope she does well without this powerful medication.

Spring Break has officially begun and although our week will be overshadowed by the upcoming Mayo visit, Caitlin is looking forward to the time off from school. She and Dad will be leaving early tomorrow, so we will quietly celebrate Easter today. The 'Easter Bunny' has visited our house early this year --- and she is now enjoying her treats and treasures from her Easter Basket! Caitlin has said “I’m so lucky I’m not in the hospital this year during Easter”!!! I am also happy to report that Caitlin was able to participate in our neighborhood's Easter Egg Hunt --- this was thoughtfully rescheduled so Caitlin could attend! It was tremendous fun for all!

We received a call from the Transplant Coordinator this week and were informed that another year must pass before finding out who Caitlin's donor was. We were told that her donor is from a country which requires a two-year waiting period before confidential information can be shared. Although disappointing, this news did in fact verify what we have suspected all along ~~~ Caitlin's donor is from another country! Silly me thought that with this clue, I'd be able to research which countries require this two-year waiting period. But I quickly found out that with 48 countries participating in the registry and with these individual web-sites written in their native language, my search was virtually impossible and ultimately done in vain.

Because of that unexplained update done recently on Caitlin's page (the one not done by me), I have been carefully watching this site for any signs of further trouble. Thankfully, nothing else has happened. I was informed by a CaringBridge representative that the password change had been done by them after I had first reported the trouble. Although no explanation was given, I was also told that CaringBridge did not believe Caitlin's site had been compromised. I will keep my fingers crossed on this one.

I am, once again, having doubts about not taking Caitlin to the Mayo for her visit this week. Although I know Dan and she will be just fine, there is always worry in the back of my mind --- and the feeling persists that I should always be with her. I try to tell myself that should something happen, I could after all be in Rochester that very same day. I guess in the end, we as parents can only do the best we can do. We are hoping and praying that the visit goes well... and that she'll have a clean bill of health this time.

In closing, we’d like to wish all of you a very Happy Easter! Caitlin’s handmade card to us said it all ~~~

“I think Easter is not only to celebrate Jesus, but it’s also to remind us how much we love one another. And to tell us that Spring is soon coming! Happy Easter!”

In all things, Caitlin continues to remind us of what's important --- and what it’s all about...

My Purpose

There isn't an explanation as to why I became sick.

All I know is God has a plan for each of us and for each plan there
is a purpose. Some of us know what our purpose in life is and others
will never find it. Then there are those like me who accomplish it
without ever realizing it.

My journey with cancer will not and has not been without purpose.
It is through my illness that I have helped doctors understand this
disease a little more so they may find a cure.

It is through my illness that I have opened the eyes to those around
me to see how precious life really is. Something we all too often take
for granted.

It is through my illness that some of those around me have realized
that life is too short to be afraid of our feelings. My cancer has
been beaten back by the power of love. It is the most powerful of
emotions, one not to be afraid of, but to be embraced. To be loved
by someone unconditionally and completely is to reach into your soul
and feel warmth.

It is through my illness that I have shown there is no guarantee for
the future--only dreams for it. Whether the future is just another
day or another 75 years, we should all dream big and live fully
everyday.

It is through my illness that I have seen the strong cry, only to
find more strength.

It is through my illness that some of us who haven't talked to God
in a while have once again begun to pray.

It is through my illness that I have joined the hands of those
familiar to those of strangers, to form one long chain.

I have already accomplished so much in such a short amount of time
and each day I continue to touch the hearts of many.

That is my purpose.

Thursday, March 17, 2005 9:29 PM CST

Thank you all for continuing to check in on our daughter; as always, your love and support mean the world to us! I am happy to report that Caitlin is doing very well and she now seems to have fully recovered from that last setback. Once again, her appetite has returned and we no longer find it necessary to feed her via the new g-tube. There have been no further incidents and/or trouble at school.

Caitlin has been very busy with schoolwork; all make-up work is now complete. She has also been diligently working on school projects --- and we have both recently learned a great deal about the Rain Forest! Two weeks ago Caitlin also surprisingly announced that she and a friend would be singing a song for their class --- the song entitled ‘I Believe I Can Fly’. Caitlin and friend Mimi have been faithfully rehearsing and practicing --- and these two young girls just today had the courage to sing this song in front of their class! From what Caitlin has told me, the performance today was as moving to her classmates as it has been to me in hearing the practice. I am just amazed at these two kids --- my goodness, how many of us would have sang in front of a group of people in our younger years or even in our later years ~ for that matter? I do not know how this particular song was selected; I can only say that it was perfect for Caitlin (for those interested, I’ll repeat the words to this song at the end of the entry). It brought both tears and chills to me each time I heard her sing it.

We received a call from one of the Transplant Coordinators and were notified that we soon would be receiving information regarding Caitlin's donor (of course we knew this already!); donor information will be coming in the mail soon! Caitlin was also asked if she would like to speak with her donor and was told a call could be arranged; of course she answered “YES”!!! We continue to be in awe of the fact that one full year has passed and that Caitlin is now on Day 377 of her new life!

There is a new ’Scheduler’ at Mayo and I believe Caitlin’s appointments were the first this poor woman took care of. There is a fine art to the scheduling of appointments --- especially when so much needs to be accomplished and when so many departments need to be visited. As I’ve previously mentioned, Caitlin’s upcoming visit is hefty --- she has visits with Audiology, Ophthalmology, Oncology, and Endocrinology. Her upcoming tests are an Echocardiogram, Bone Densitometry, X-rays, Bone Marrow Aspirate, and all the other usual. When our recent packet of appointments arrived, my blood boiled to see that Caitlin’s upcoming Easter visit was scheduled over the course of nine days (taking Caitlin‘s entire Spring Break and then some!). This new Scheduler promptly received a call from one irate customer (me) informing her that she either fix the appointments and reschedule within a reasonable amount of time or she could just cancel them all. I also proceeded to inform her that a nine-day stay in Rochester would cause immeasurable loss of money, days, etc. to our family and after all who can afford to spend nine days in Rochester??? This poor woman --- to have felt my wrath!!! She quickly assured me she would work on the problem and would call me back in a few days. Hah!!! She called me back within 20 minutes and somehow she had magically rescheduled all appointments to fit within three and a half days. Ok, the irate customer problem was solved!

Dan and I are once again juggling ‘Leave Time’, so he will be taking Caitlin for her upcoming visit. She is upset to be scheduled for a Bone Marrow Aspirate without having Mom there, but I think this is just a breaking away from the usual and customary. I have been with her for so long and through so much (while Dan did what he had to do), Caitlin tends to forget how comforting Dad’s presence can be. The two of them will be just fine.

And in my final note I have to sadly report that somehow our CaringBridge site has been compromised. Several days ago, someone somehow signed into this site and actually made an entry onto Caitlin’s main page. For those of you that may have seen an entry pertaining to ‘Fellow Bush Haters’, I can only explain that the words were not mine. This site has always only been intended to be about Caitlin. I am sure that for those of you who follow her, you know how I speak and write ... I am also sure you could recognize an entry that just doesn’t seem to be mine. In addition to this random entry on Caitlin’s page, our password to this site has also been changed without our permission; I can only imagine what horrors this could bring.

I have heard of other troubles with CaringBridge... such a wonderful concept, if people weren’t so cruel and mean-spirited. Caitlin’s page certainly is not the first site to be invaded. It is unimaginable to think that there are internet surfers out there preying on the likes of families such as mine.

I have been in contact with CaringBridge and am awaiting a response regarding this last password change. More than anything, I would hate to shut this site down. So many care about Caitlin! And my entries and reporting of Caitlin’s health has been, in more ways than I can explain, a comfort. I will let you know of any updates.

Love, Janine

P.S. As promised, here are the words to Caitlin’s song...

I Believe I Can Fly
Written by R Kelly Lyrics

I used to think that I could not go on
And life was nothing but an awful song
But now I know the meaning of true love
I'm leaning on the everlasting arms

If I can see it, then I can do it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

See I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, oh

If I can see it, then I can be it
If I just believe it, there's nothing to it

Hey, cuz I believe in me, oh

If I can see it, then I can do it
If I just believe it, there's nothing to it

Hey, if I just spread my wings
I can fly
I can fly
I can fly, hey
If I just spread my wings
I can fly
Fly-eye-eye

Thursday, March 3, 2005

I just wanted to let you know that Caitlin's school has addressed the issue of the 'spitting boy' who bullied Caitlin. He has been suspended from school and of course his parents were notified. Apparently, the parents feel just terrible about the whole thing. Dan and I are extremely grateful that Williams has taken care of this... especially considering that the incident occurred after school. Hopefully, this boy will have learned an invaluable lesson... and will think twice before he ever bullies anyone again.

Tuesday, March 1, 2005

Caitlin’s infection last week hit her like a ton of bricks. She became very ill and was extremely weak; her fever continued for days. It has been quite some time since I have seen her this ill --- it was unnerving, to say the least. Although we considered rescheduling her Mayo visit and we worried her tests results would be effected, Caitlin thankfully recovered the day before we were scheduled to leave. By the time we reached Rochester on Sunday, she seemed to be back to her old self. Thank goodness Caitlin continues to bounce back after whatever is thrown her!

We had great expectations for this Mayo visit, and I now can see that these hopes were our downfall. I suppose if you never have aspirations you also can never be disappointed; perhaps this should be our new philosophy. Our Mayo visit was just as they always seem to be... a bit of good news tainted with a trace of bad. Or perhaps better said --- our visits always seem to have that bit of ‘reality’ thrown in.

By far the best and the most important news is that Caitlin CONTINUES IN REMISSION FROM CANCER --- her scans were clear!!! She has now been in remission from her 2nd cancer for one solid year! Dr. Matsumoto’s final report of Caitlin’s total body scan states that her lungs “are now stable” and in fact the results show “a slight improvement”. Whether Graft vs. Host due to transplant has been the culprit is still unclear, but Dr. Wylam feels that there is “no on-going, active attack against her lungs”. Dr. Wylam also told us that we may now begin to taper Caitlin off of steroids; the scheduled taper should be complete one month from now. With Prednisone gone, Dr. Henry has said that Caitlin’s course of Penicillin and Diflucan may be stopped shortly thereafter.

The most heartbreaking of news was to hear that Dr. Moir did not want Caitlin’s g-tube removed. He stated that he “wanted a bit more convincing that she no longer needed it” and also said that “Caitlin has so much scar tissue built up from this type surgery that when this g-tube is gone, there will be much less space to put another one in“. Dr. Khan was surprised and said that “I thought he’d be ok with Oncology wanting it out”; she apologized many times to Caitlin. In the end, another g-tube balloon was put in because the old one was leaking... instead of removal, Caitlin came home with new equipment. And although we don’t blame anyone and never doubt the wisdom of Dr. Moir and these Mayo magicians, it was a disappointment nevertheless. After hearing that her tube would not be removed, Caitlin crawled up onto my lap and just sobbed like a baby --- and I don’t blame her. Although I remind her of the big picture she is after all just a child --- she didn’t care that the cancer wasn’t back... she only focused on the fact that she was going home once again with a much-hated tube in her belly.

For me, my disappointment came from my initial excitement at Caitlin’s having reached one year post-transplant. I don’t know if Dan felt this way, but I believed and envisioned that we would be told Caitlin had reached another one of those much-sought-after goals. One year post-transplant seemed to be a tremendous hurdle for this was a goal not attained by many. I imagined being told “Caitlin now has a 50 percent more chance of survival”. I set myself up when I dared ask the question “What does one year post-transplant mean”? Words of wisdom from me now are “Don’t ever ask a question unless you are prepared for an unexpected answer“. The answer I received to my question about her chance of survival is that now "her chance is improved”. I hoped for glorious numbers or fabulous statistics; in the end I was reminded that with Caitlin there are no numbers. Dr. Khan did however say that “But she’s doing great!!!”

Other news told was that “Caitlin’s immunologic function is slow to recover”; her Lymphocyte function is still at 1.3--- on the low side of the range. She weighed in at 54 pounds and has shown no additional growth since that last spurt months ago. If we thought this month’s visit was ’hefty’, next month’s visit will be even heftier. Caitlin is to again begin visiting with her Immunologist for the slow lack of response following transplant; because of this we were also told it is much too soon to begin vaccinations. Although we hoped IVIG would no longer be needed, it appears that this will continue for quite some time. Caitlin will again visit Endocrinology who will access whether she will grow or not; bone-age studies will begin. Caitlin will also have repeat tests regarding her basic heart, liver, kidney, and all other base-line tests she had done one year ago --- to see if there have been any changes in function since transplant. We are next due at the Mayo on Easter Sunday --- another disappointment to Caitlin, for she will again miss our neighborhood’s Easter Egg Hunt.

Although disappointing, I have to say that things are not that bad --- it could have been so much worse!!!

On a last note, I have to tell you of our most special moment during our Mayo visit. This moment occured when we visited our ‘old home’ --- the 3rd floor pediatric wing Francis building at St. Mary’s Hospital. Caitlin’s nurses were so happy to see her and in fact several actually stood in line to touch Caitlin’s hair!!! Caitlin dazzled them with stories that only she can tell... and there were smiles and rah rahs all around. I remember in times past being told by these very same nurses that the only thing which gets them through are visits from children when they are doing well; I believe this was just such a moment. All commented on how wonderful Caitlin looked!

I'd also like to thank you all so much for the many kind words in defense of Caitlin regarding 'the boy' and the 'spitting incident' after school. Tomorrow she returns to school after a lengthy absence --- from this point, I don't know what I will do...

Wednesday, February 23, 2005 8:23 PM CST

A teacher from Caitlin’s school taped the interview that was recently broadcast on our local news channel for the Leukemia and Lymphoma Society‘s fundraiser; the spot was shown to students at Williams Intermediate throughout the school day. Caitlin has certainly enjoyed the celebrity status!

At this point, I can honestly say that I don’t believe there is any child in that school who does not know of Caitlin’s medical troubles. But irregardless of known issues, when Caitlin was later walking home from school she was confronted by a boy from school that she does not know. He made several threatening and hateful comments to her --- most remarks pertained to her size. Although terrified, I am proud to say that Caitlin stood her ground. The boy, however, persisted. During attempts to get away from him, he rode in circles around her while on his bike --- blocking Caitlin’s path at all turns. He then began the ultimate of insults ... he spit on her. This was not just a once or twice deal ... the boy spit so many times that Caitlin came home with a wet coat (she told me that she pulled her hood up so he couldn‘t get her face). Given all of her breathing problems as of late, when she finally did get away Caitlin managed to run the rest of the way home.

I am sure I do not need to express the anger Dan and I have felt; for those of you who so lovingly follow our child, you are perhaps feeling this too. With all that we know about how mean kids can be, we cannot excuse this behavior; given her condition we view this incident as a direct threat against Caitlin’s life. Initially I was angry at the school but as my sister Karen (the Principal) pointed out “The school is not responsible for what happens off school property and after school hours”. When I calmed down, I could certainly appreciate this fact. We then considered calling the police but wondered if there is a law against bullying? In the end, we have looked for this boy all weekend... and have so wanted to get in his face... and we also want to speak with his parents. Given our anger, perhaps it best we have not found him or his parents right away...

Whether this event has to do with another we’ll never know for sure... but Caitlin is now once again ill. She has been running low-grade fevers since Monday and although we've treated her with Tylenol, the fever has persisted. Dr. Huettman feels she has yet another lung infection; a course of Zithromax has begun. When I expressed my frustration over another infection for Caitlin, Dr. Huettman gently reminded me that “Caitlin’s course of steroids unfortunately makes her more susceptible to infection”. When told of the ’spitting incident’, Dr. Huettman said “I certainly blame him”. Because of Caitlin's diminished appetite, we have begun g-tube feeds once again.

This issue of the ’bully’ is not over... it is only overshadowed right now by Caitlin’s present medical condition. But in my mind I am working on a bill for this kid... the cost of lost time from school, lost time for Mom from work, makeup work at school, a doctor’s appointment, cost of an antibiotic, etc. And then there are the long-term costs... the effects this infection will have on Caitlin’s upcoming Mayo appointments. Surely, this will effect her test results --- from the pulmonary function tests to blood work. Perhaps her doctors will now feel additional weeks on Prednisone would be wise... an enzyme or two will surely be elevated and this will require additional tests... heaven forbid, the doctors decide that now is not the time to remove her g-tube. Another consideration is Caitlin's loss of freedom... she has loved to walk home from school on a good-weather day, but now Mom will be picking her up. Oh I’m angry --- more than words can say.

I admit to being livid while writing this journal entry, but Caitlin has just showed me a poem that she read and which meant a lot to her. It is named ‘Twinkle’s Lullaby’ and I am compelled to quote...

Stars are twinkling overhead
dancing on their way to bed.
In the stable ponies dream
of apples and oats,
of hay and cream.
Tomorrow is another day
to be with friends
and run and play.
Close your eyes and go to sleep
while all the bright stars
dance and leap.

With all things, Caitlin helps me through...

Goodnight, friends.

Saturday, February 19, 2005 10:34 AM CST

The complete interview with Caitlin has now been aired on television. I can only say that it was absolutely wonderful! Our phones have been ringing off the wall... and I am hoping the phones and the donations for research have been steadily coming in to News Channel 4 as well!!! Caitlin's comment after seeing the segment was "Gee, I look good"! Thanks Carol, Katie, and all of News Channel 4!!!

For those of you that would like to read about this interview and/or perhaps would like to donate to the worthy cause of fighting Leukemia, Lymphoma, and Myeloma please visit www.whbf.com and then select under Top Headlines ’Stepping Up For Caitlin’. What a surprise and an honor to see this posted on the Channel 4 web site this morning!!!

With the upcoming Presidents’ Day holiday, all three of us have a long weekend. Usually long weekends are spent at the Mayo, but this time we will be spending a relaxing time at home! What a joy!

Next weekend, however, begins Caitlin’s hefty schedule of Mayo appointments; we will be in Rochester for several days. She is to be seen for one year post-transplant tests (YEAH!!!), specialty and routine blood tests, IVIG infusion, scans for cancer, pulmonary function tests, consults with Pulmonary, Oncology, Infectious Disease, and has an appointment specifically regarding her Acapella breathing treatments. And we certainly can’t forget the scheduled G-TUBE REMOVAL!!! Each morning Caitlin asks, “How many more days until my tube comes out”? She has happily been counting the days to this long-awaited return to normalcy!!!

Wednesday, February 16, 2005 8:20 PM CST

What a day this has been! It all began last evening when Katie from News Channel 4 called to tell us "The station liked the segment so much, we're running spots throughout the day tomorrow"! Because I worried how Caitlin's story would be presented, I don't believe I got another wink of sleep! And true to Katie's word, when I turned on Channel 4 early this morning there was our beautiful Caitlin!!! And the segment just took my breath away --- and brought tears to my eyes as well!!!

For those of you unable to see it, I will try to explain. The spot first began with Katie running and the words spoken went something like this, "There's a going race on... a race against time... ". Then pictures of Caitlin were shown, both past (during chemo and oh so sick) and present (happy, well, and with Mighty on her back) with the words spoken "Strength, determination, perseverance". Then “Meet this extraordinary child Caitlin tomorrow...” This is not verbatim and not all of it, mind you, but you get the gist. It was a true heart grabber --- and I’m certain not just for Dan and myself! I am sure that this and Katie’s efforts in ‘Team in Training’ will raise quite a bit of money to be donated towards research --- a cause we stand 100 percent behind! What an honorable and wonderful thing for Katie to do!

Today Caitlin and I visited the News Channel 4 set. Caitlin was warmly welcomed and was even given gifts! Many said how they enjoyed seeing the preview of her interview and complimented her on how well she did! Katie gave us a tour of the place and we also got to watch the live news broadcast --- it was quite an experience! It also meant the world to me when one of the newscasters later came up to me and quietly said “Bless you Mom” and gave me a hug. What wonderful people!

Although Caitlin has had increased breathing problems recently, she seems to be feeling well overall. Her appetite has once again returned (after last week’s episode), and once again she has made honors for her 2nd semester at school (always a good sign). She has been very worried that her Mayo doctors would find out about what happened last week --- she hadn’t realized her Mayo doctors were notified right away and that they did, after all, get the CT results! Caitlin tried to get me to promise I wouldn’t tell them anything until after her g-tube was removed and although I understand exactly where she’s coming from, I had to explain that things just didn’t work like that and that it really wouldn’t be a good idea to keep things from her doctors. Caitlin also had a wonderful time at her first dance and reported that “It wasn’t mushy or anything”.

We had a wonderful surprise today from dear friends of ours... friends whom we lived with (so to speak) while our daughters were going through chemotherapy. Caitlin got a beautiful note and candy from Jessie, and I got a beautifully framed poem that touched my heart in more ways than words could explain. The poem is as follows:

THE CHOSEN MOTHERS
by Erma Bombeck

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I
see....ignorance, cruelty, prejudice...
and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

Thanks, Pam. It’s for you too, you know!

Thanks for checking in... and for thinking of us. God bless!

Sunday, February 13, 2005 6:47 PM CST

Firstly, I would like to apologize for my gloominess the other day. There are things, sometimes, I would just not like to report in Caitlin's journal and this week's account was one of those times. But unfortunately, I can only tell it how it is; after all, our life is all about those ups, downs, and infuriating unknowns.

Since those mysterious bellyaches earlier in the week, Caitlin has thankfully been doing just fine and there have been no repeat performances. I can't tell you how much we worried that something serious was once again going on with her. We live in constant fear of cancer once again invading her body or that she'd again have a spontaneous abdominal perforation or blockage. Today it seems that Caitlin this week just had a plain, old bellyache --- can you imagine her having anything normal??? We have to accept the idea that it is now entirely possible that something 'absolutely ordinary' could happen to her!

Today Katie from News Channel 4 came to our home to interview Caitlin. As I've mentioned, Caitlin has been selected as the 'Honor Patient' in the Leukemia & Lymphoma Society's 'Team in Training' fundraiser; Katie herself is participating in this fundraiser and is helping in raising funds for research into these terrible cancers. This supposedly will be an ongoing thing for the next 16 weeks as Katie trains for her participation in the 100-mile bike ride and/or triathlon. Let me just say that Dan and I are extremely proud of our daughter (as always) for how well she did. Caitlin was absolutely 'just herself' in front of the camera and she told it just as it is. The interview lasted about an hour and the first segment will first be aired on T.V. this coming Thursday.

Memorable moments were many, but those I'd like to mention were when Caitlin was asked "Tell me about when you first found out you had cancer" and she answered "My parents were taken to a room and told, and then they came back and were crying and told me. I was scared, because I didn't know what would happen". "What would you like to tell other kids that have just been diagnosed with cancer?" and she answered "Just take your medicine and do what the doctors tell you to do". "Tell me about treatment" and she answered "A lot of times I just didn't feel good and I'd turn my tutor away". “What got you through?“ and she answered “My friends would call me. And one of my friends Ashley got her hair cut off and now that hair is a wig for another chemo kid“. "Tell me about your transplant" and she answered "It was hard because we had to stay in my room... but I'm happy about my transplant because now I don't get so many diseases and I have more energy and feel great".

Caitlin was also very much herself when she was hamming it up in front of the camera; she had our dog Mighty with her and told Katie "Yeah, she's my best friend... even though she's licking her butt right now" (hopefully, this part won‘t be on the air). And then when Caitlin picked up Mighty piggy-back style she looked right into the camera and said "SHOW DOG"! Caitlin also did an impersonation from 'My Favorite Martian' and sang a song in front of the camera. Katie said to us "You didn't tell me she was so talkative!" (I‘m sure these nice people had no idea what to expect prior to visiting us)!!! Dan and I were also asked a few questions and we spoke briefly... we were very nervous and suffered from 'severe dry mouth' --- we certainly did not do as well as our daughter! We have also been invited and will be visiting the set of News Channel 4 to see Katie do the news this coming Wednesday! Our experience today once again affirms how very special our child is, and how very lucky we are to be parents of this totally cool and awesome kid!

Our week also consisted of our attendance at the yearly fundraiser for our local chapter of the 'Make a Wish Foundation' (we missed last year's event due to Caitlin's treatment). It was a wonderful night and I'm sure very successful in raising monies for other children to have their lifelong wish fulfilled. Those at this foundation are miracles in themselves --- for what they do and what they grant are beyond mere words! Although our attendance at this event was very emotional for us, we will always attend --- no matter what happens. This year it sadly seemed that there were many more families announced as a 'Wish Family'... and more families were introduced as "the families of..." instead of "so and so and family"... we know exactly what this means.

We have long realized that Caitlin would take us places we never wanted to go; this holds true in more things than I'd like to admit. Our desire always has been that we move quietly throughout our lives. Caitlin, however, sets her own pace... and we follow as best we can. Miraculously, things do seem to work out for the best. In the meantime, we have been given the unique opportunity of appreciating and truly enjoying each and every day. How many of you have been given that gift???

So many have checked Caitlin's site this week... and I know many of you have said extra prayers this week for her. Thank you so very much for keeping our child dear to your hearts. And thank you for those extra prayers --- we will always take these!!!

Thursday, February 10, 2005 9:31 PM CST

Although I still maintain the desire to end this journal by one day saying "We've been told there will never be any more worries!", the fact of the matter is that this will never happen. It is true that children are now surviving cancer in more numbers than ever before, but recent studies show that these children will continue to be plagued by health problems throughout their lifetime; the long-term effects of treatment are absolutely frightening. While we continue to hope and pray that this will not hold true for Caitlin (or for any other beloved children), facts are facts. I am also beginning to grasp the depth of the statement “Because of Caitlin's medical history...” and to understand that nothing medically that happens to her will ever be taken lightly.

Our week began quietly and normally enough, but out of the blue Caitlin once again developed sudden-onset abdominal pains. I was with her when it happened --- she went from one moment laughing and singing to the next moment screaming and crying. Her appearance also changed from a robust, healthy-looking child to the look of a frail, sickly child. I couldn’t even believe what my eyes were seeing. The initial bellyache subsided quickly, but unfortunately it reappeared the next day --- more severe the second time around. Caitlin was seen by Dr. Huettman (who promptly called the Mayo); an hour later she had an emergency CT scan done.

While awaiting the contrast to do its magic prior to CT, Caitlin said “This is not a good sign”. She went on “You know Mommy, I can’t promise you my cancer won’t come back”. She thought for a few minutes more and then said “But the doctors have given me more time“. When I asked her what she meant (although I already knew what she would say) she answered “I didn‘t think I’d live to be 10 years old”. I had to fight back the tears when she said this, for ours has been a long, hard road to acceptance. But no matter what I tell myself, it’s just not right that a child would have to think this way --- no matter how lightheartedly the child spoke.

The CT scan did not show anything ominous such as tumors, etc. --- and there is tremendous comfort in this. But Dan and I are once again reserving our opinion for we know all too well that Caitlin has had many scans done with normal results while she had total abdominal blockage. We have been told many times that Caitlin could develop a perforation or blockage spontaneously at any time due to her bowel resections. But it is also entirely possible that Caitlin’s bellyache was a normal occurrence --- this happens to us all from time to time! Truly, only time will tell.

Although this has been a hard week, I am holding onto the words of a friend... “Yeah, but it’s been a long time in between”. As I was speaking, this friend kept gently reminding me of this fact. And you know what --- she’s right. It has been a long time since we’ve had an emergency... and maybe as time passes the emergencies will get fewer and farther between. Thanks, Cherie!

There’s more I’d like to say, as there really have been a lot of funnies going on lately! But Caitlin is after all a teenager; it wouldn’t be right if I divulge all of her confidential information! But I’ll just quickly say that she is now ’going out with someone’ and tomorrow she is going to her school’s Valentine’s Dance!!! We had tremendous fun today shopping for a Valentine’s gift “for a boy”! Although this side of life is never something you want to rush along, I am happy for Caitlin. “Going out”, after all, at this age doesn’t mean anything other than ‘they are going out’. My Mom dreaded when I got to this point years and years ago but for me and where we are at, Dan and I can only be thrilled with Caitlin’s happiness. We never want this child to miss a thing!

Thanks for checking in today. God bless!

Janine

Wednesday, February 2, 2005 7:35 PM CST

Although it seemed we would never get to this point, Caitlin has been doing so well recently that we have not needed to feed her via g-tube in quite some time. Dan and I just last night even agreed with her that now would be the perfect time to have this tube removed. With our permission, Caitlin called the Mayo Clinic this afternoon and spoke with Dr. Khan regarding this (there is no reason why a 13-year old cannot call her own doctor!). After a few questions about how she is doing and with concurrence from me, Dr. Khan agreed to schedule g-tube removal during our upcoming visit at the end of this month!!! With this tube’s removal, another large piece of normalcy will return to our lives --- and Caitlin will be free to do most things that she wants to do! I bet she even will be asking for a snowboard just as soon as she thinks of it!!! Words here once again fail me, but suffice to say that many happy tears have been shed in this house tonight. Caitlin said that "Today is the happiest day of my life"!!!

Caitlin was selected and has agreed to be the honor patient for the upcoming ‘Team in Training’ event held here locally for the Leukemia & Lymphoma Society. This event provides training to volunteers who run or walk in a marathon/triathlon or participate in a 100-mile bike ride; funds raised support leukemia, myeloma, and lymphoma research and patient services. A newswoman from one of our local channels is participating in the event and has asked that Caitlin be present during some of the team’s training sessions. Caitlin also will be interviewed a few times over the course of the 16-week training period and these interviews will be aired on T.V. I was told that it is helpful to put “a face behind the disease” and although this brought a twinge of sadness, we are happy to give back to an organization that has been very helpful to us throughout these past several years --- and an organization that provides the hope for a cure from many dreaded cancers.

For all the trouble Caitlin had in the beginning of the school year with other students at Williams Intermediate, she now seems to have won them all over. It has been a very, long time since Caitlin mentioned any teasing or any trouble. Some time ago Caitlin’s school nurse Barb mentioned that “Caitlin is so happy --- even more than she was at Adams!“ I can now see that Barb was absolutely right, as Caitlin truly is happier than I have ever seen her! Last week Caitlin was voted the ’Best Dressed 6th Grader’ and she even had a special picture taken of her for the yearbook. Many, many friends congratulated Caitlin throughout the day. When we told Dan this news he quietly said “I knew she’d end up running the place”. It has been the week of ITBS testing throughout schools across the U.S.; Caitlin is grateful that these tests are now over.

In the past, Dan has been offered the opportunity of advancement at his company. Due to Caitlin’s medical condition and the stress that our family had been going through, Dan previously declined any offer of promotion. When Dan was again recently offered advancement, after discussions we decided that we should no longer live in the past and make decisions based on the fear of something happening to Caitlin; Dan accepted the promotion. He has just this week begun a new work path... and I am so proud of him for how very hard he works and all that he has achieved. Believe me, working well is not an easy thing to do when there are so many concerns and worries at home. Dan’s promotion is a very good sign that we are feeling better about Caitlin’s health, that our family is healing, and that we are moving forward (albeit fingers crossed).

It has been 333 days since Caitlin's 'Matched Unrelated Donor' stem cell transplant, and it is unbelievable to us that the one year anniversary is quickly approaching (we will soon be finding out the identity of her donor!). I remember exactly what was happening in our lives just one year ago today; with this clear picture, I am able to concentrate on all the wonderful things about today! Caitlin seems to be able to put the past almost entirely out of her mind, as she has only brought up cancer once in a great while. Dan and I know what the Mayo reports say and we realize that there still are some concerns, but we cannot dismiss how she appears to us --- absolutely fantastic and extremely well!!! She has an abundance of energy, an enormous appetite, and then there are those rosy cheeks! All is well in our world!!!

Tuesday, January 25, 2005 7:13 PM CST

In past years, Caitlin has received several rescue treatments here locally at the Genesis West Infusion Therapy/Cancer Treatment Center; this center caters strictly to adults. During that time, Caitlin had been undergoing chemotherapy for her first cancer and luckily Genesis agreed to take care of her initial needs --- beginning simply enough with blood transfusions, platelets, etc. When she was eventually prescribed IVIG, Genesis thankfully kept her on; to this day Caitlin continues to be the only pediatric patient seen there. We consider ourselves very fortunate.

This Infusion Center is very different from the one we have visited at St. Mary's Hospital. The center has the feeling and appearance of a beauty salon --- with the nurse's station in the middle and large, reclining chairs all around; it almost seems that hair dryers should be attached to those chairs! But within these walls, many adults receive their scheduled dose of chemotherapy. There is no small talk, never any chatter, and certainly very little laughter. I remember in times past that Caitlin seemed to be a much-felt presence while there; all eyes focused on this young, slip of a child who exuded energy that just could not be contained --- no matter how ill she was. Most times I felt Caitlin was disruptive of the quiet these people were perhaps accustomed to.

Today, after a very long absence, we happily returned to this Infusion Center --- we had not been there since August of 2003! Caitlin received her monthly IVIG infusion there just like old times! This may sound like the simplest and silliest of things, but it was absolutely wonderful to be back at our local hospital for her infusion! And we are so grateful that this small bit of normalcy has returned to our lives!!! Caitlin was treated as if royalty and today was even assigned a private room (I’m not sure if this was for our sake or for the need of quiet for the other folks). But as usual all eyes were upon Caitlin! Anyway, it was wonderful to be back and to visit with old friends!

I was surprised to hear that Genesis had a very difficult time getting the IVIG product Caitlin needs. The nurse told us that they had to “beg, borrow, and steal from another hospital” to accommodate her. The Gamma-guard product Caitlin requires is supposedly in high demand and is not readily available; we were told this is a “rare type of IVIG”. We were sadly informed that should Caitlin need another infusion here locally, the Mayo doctors would have to prescribe the product Carimune --- and I’m not so sure they’d be willing to do this given all the reactions Caitlin has had in the past. Oh well... easy come, easy go. She was taken care of today --- and we didn‘t have to travel all those many miles to the Mayo!.

Caitlin continues to live life to the fullest; I truly can’t find the words which adequately describe how very much she loves each and every day! She seems to always “go for the gusto” at each and every moment; her joy and excitement is positively addicting! Although the teenage years were something Dan and I had not been looking forward to and while we worried that Caitlin may go through some changes, she certainly is not showing any signs of rebelling against us or the medical journey she presently is on. She continues to tell us at every opportunity how very much she loves us and she happily goes along with all things necessary for her good health. Caitlin just this week got her latest report card and she continues to do extremely well --- 3 A’s, 3 B’s, and 2 C’s!!! Thankfully, there was no report of ‘disruptive behavior in class’! She was also thrilled to have recently dissected cow and sheep eyes in school (Mom thought long and hard for any reason Caitlin should not be allowed to do this, but unfortunately I couldn‘t find one)! She continues to eat well and is looking very fit; honestly, I’ve never seen this child look so well! Caitlin no longer fits in ‘slim pants’; we have recently bought her regular-sized clothing (size 8) and I thought this day would never come!!! She is eating so well now that we no longer feel the urgent need to feed her via g-tube; we only do this every once in a while. Caitlin also has sported rosy cheeks from time to time --- and this is something she has not had in her entire life! I should have mentioned this before, but Caitlin now has a full head of hair and in looking at her you can no longer tell that she’d been through anything. She’s had hair for quite some time, but now you can no longer see her scalp below. I am very happy to say that Caitlin looks fit, well, and terrific --- just like any other normal child!!!

But in the true fashion of our life, our silver linings always have a bit of a black cloud (or is it that our black clouds always have a silver lining?). As usual with any hospitalization or visit, we have received a written account of our recent Mayo appointments and these always have a bit more information than what I have understood or heard; perhaps I just am not able to comprehend all the information given me. Whatever the reason, our recently-received written version reported that “Caitlin has had history of chronic lung disease prior to transplant, and after the transplant she developed several episodes of pneumonia. Last time she was seen by Dr. Wylam who recommended a short course of steroids to see if her chronic lung disease will show some type of improvement with the assumption that it could be inflammation secondary to immune reconstitution versus graft-versus-host disease”. The report further said that “Dr. Wylam believes that she has chronic lung disease. It is unclear if this is related to graft-versus-host disease. He recommended to continue the Prednisone 5 mg every other day for three months and to repeat pulmonary functions tests, chest CT, and see her for follow-up in a couple of months”. We are disheartened to hear the possible diagnosis of Graft vs. Host Disease mentioned again. We are also concerned that Caitlin must remain on steroids through the end of March. We are also very worried about the fact that Caitlin’s lungs are at 65 percent capacity according to the results from her last Pulmonary Function Test. And just to mention, the recently prescribed Acapella product no longer seems to be helping Caitlin; there is no cough after her treatments.

We are so looking forward to Spring... and warmer weather. Hopefully Caitlin’s lungs will heal, and we can then move forward with less worry; Caitlin always does better in warmer weather. We have managed to escape the flu so far this year and are grateful. Dan and I are anxious for Caitlin to get off steroids, have her g-tube removed, and to begin vaccinations. We will also rest easier once she has passed the one year mark of transplant --- the upcoming date of March 5th. With these things accomplished, we can truly move forward and begin life anew.

Thanks for checking in on Caitlin today The love and prayers that continue to surround us is appreciated!!!

As always,

Janine

Monday, January 17, 2005 8:42 PM CST

We have just returned from a visit to Minnesota... and are so thankful that our stay was brief. It was bitterly cold up north with winds that take your breath away; the daytime high reached a mere 1 degree and the wind chill was at 20 below. Rochester and surrounding areas appeared to be just frozen wasteland --- had a picture been taken it could have perhaps appeared in National Geographic and passed for Antarctica! Our visit was a reminder of how lucky we are to not be living there yet again this winter.

Caitlin had a follow-up with Dr. Henry from Infectious Disease. Dr. Henry reported that the sputum culture from the end of December did in fact grow; it was positive for Pseudomonas fluorescens/putida and Stenotrophomonas maltophilia. Fancy sounding microbiology, but what it means is that Caitlin lungs have ‘environmental organisms’ that are common in patients who have chronic airway disease and are unable to clear the secretions. It was explained that because Caitlin cannot clear her lungs, these organisms invade and cause infections such as the pneumonias she has had since last August. Dr. Henry referred to these organisms as “cousins of serious organisms that cause a lot of problems” and that “should Caitlin develop another pneumonia these organisms would need to be covered”. Dr. Henry also explained that she does not want to prescribe anything additional for Caitlin at this time because these organisms can and do build a resistance to antibiotics... and the “big guns” may be needed at a later date. Enough said.

At this point, we have known Dr. Henry for quite some time and can judge how serious something is depending on her demeanor. Dr. Henry seemed much more concerned at Caitlin’s last visit than she did today. In fact, Dr. Henry even said that Caitlin’s lungs sounded a bit better than at last visit, although cracks and wheezes can still be heard from each lobe. Although I don’t much care for the thought of ‘organisms living in Caitlin’s lungs‘, Dan and I have also been concerned with the fact that Caitlin has been on many, many antibiotics. Saving the big guns for the time when needed most is a philosophy that we have long understood.

Caitlin was issued a ‘Acapella vibratory system’ because of her need for Positive Expiratory Pressure (PEP) Therapy. It sounds fancier than what it actually is, but what it does do is help Caitlin cough after each usage and this helps clear secretions; we were instructed on its’ proper use and care. Caitlin must use this 2 - 3 times per day.

Caitlin was an absolute horror last night in our hotel room. These steroids continue to make her sensitive, tearful, and worst of all fidgety; she just cannot be calm at any time and always seems to have to be moving, jumping, doing something, etc. I had to finally scream at her at 11:00 o’clock last night to simmer down and get in bed --- and to quit jumping up on the walls because our neighbors were perhaps trying to sleep. I hope that she is behaving well in school.

She also opened up a little bit yesterday when we drove by St. Mary’s... Caitlin said “I have such bad memories of that place”. She went on “I remember when I had my first cancer... my stomach hurt so bad and you and Daddy were taken to that room without me and told I had cancer”. She then said “I remember you came back to my room and were crying... and then you told me”. I tried to remind her that we’ve had happy memories of St. Mary’s too... and that twice we’ve been told she was in remission there. She wasn’t buying it for a minute.

Although I am grateful for all that we have been given, I will forever wonder who Caitlin would be if she had had a normal life with normal, everyday problems. Imagine the person she would be.. and the life we could have had. I will never know if our lives would have been better... or worse. Would we feel the closeness, appreciation of each day, and the love that we feel today?

Wednesday, January 12, 2005 9:17 PM CST

In my last update I spoke of Caitlin's tears regarding the need to keep her g-tube for a few additional months. I also mentioned the fact that Caitlin has to be careful while carrying this additional 'hardware' in her belly. But never to let a moment pass her by and never to feel sorry for herself too long, Caitlin's tears lasted for only about one second. The next day and with the major snow that did in fact come to our area, Caitlin took matters and her own destiny into her hands. Unbeknownst to us, she went snowboarding the next day. That’s right --- she went down a steep hill UPRIGHT 5 different times!!! I can’t say that her parents are totally pleased (imagine what could have happened!!!) --- but she had a ball, she thoroughly impressed her friends, and she truly felt alive. How could we fault her for this? She was so happy and excited to tell us of her day and it was hard for us not to show how proud and happy we are of her for who she is --- yet Dan and I were compelled to remind her (gently) of the need to be careful. Needless to say, we had to tell her that she is not to put herself in harms’ way nor is she to snowboard until all foreign objects have been removed from her body --- all the while containing our smiles at the tenacity of our daughter! God love her!!! Caitlin has already even said that she wants a snowboard for any upcoming reason she would get a present! Someday soon, we hope, we can just say to her “You go girl”!!! That will be so wonderful!

We’ve had a few more calls from Caitlin’s doctors. Dr. Henry wants to proceed with the issuance of a product that can help Caitlin clear her lungs. Although we were supposed to have 8 weeks at home, I've been told we need instruction on the use of whatever product Caitlin is prescribed; we have a tentative appointment at the Mayo this coming Monday. We are not by any means upset; as always, whatever Caitlin needs will get done. I have also spoken with the Infusion Therapy Center here at home; they are more than willing to accommodate Caitlin’s needs --- and are in fact happy they will be seeing Caitlin again! There was a bit of a hesitation when I told them Caitlin no longer has a catheter, but I quickly added "She does much better now with pokes, and she'll even show you the vein that works the best"! With this hoped-for laugh, all was again well. I also dared ask if the Infusion Center was now helping any other pediatric patients --- and was told “No, only Caitlin”. We are so lucky!

Caitlin is looking extremely well, I must say. Her ferocious appetite continues thanks to Prednisone, and she now weighs in at 57 lbs! This is the most she has ever weighed in her life! She also seems to have outgrown the slim pants she has worn all of her life --- and this is a very good thing! She is eating so much now that we have not mechanically fed her in a week! My only concern here is the fact that she is ’snacking’ more than eating well; I have seen her eat 6 ice cream sandwiches in a day yet she will turn her nose up at meat, potatoes, and vegetables. I have given her a stern talking to in this regards.

Caitlin has had a few minor issues of vomiting and nausea, but not anything too serious. It is hard to believe that the effects of total body irradiation from 10 months ago still somehow appear, but we were warned of the possibility of this happening over a long period of time. Of course, I had previously mentioned Caitlin hadn’t had this for so long and then these things reappear! Sometimes I wonder if I should just stop speaking of anything at all!

Dan and I still do fumble through our days, but somehow now it seems to be a bit less. Is it possible that we are crossing over some kind of bridge? Although we will never be allowed the luxury of being without worry, right now we are feeling very well about Caitlin’s health in general. And for our family, this is enough for now.

Tonight we are thinking of many beloved children and the parents that have faithfully seen them through the course of their life. So many children have passed over this holiday season and during these past few months. I can’t tell you how our hearts break over the loss... yet with this we are reminded of how very grateful we must always be for the life of our child. We continue to pray that Caitlin will always be with us, and that Dan and I will never know the pain that these parents feel.

We are also thinking of Andrew, Deb, and Jerry --- and pray that they have safely arrived home. We also hope and pray that Baby Katelyn and her family are enjoying cherished and well-deserved time at home. We hope and pray for our extended Caring Bridge families as well... and are sending positive thoughts and strong prayers to all.

Thank you also for continued thoughts and prayers for our little family...

Tuesday, January 4, 2005 6:39 PM CST

I received a phone call today from Dr. Rodriquez at the Mayo regarding Caitlin's course of steroids. Dr. Wylam was consulted regarding this issue and he felt an additional few months on Prednisone would be wise. The philosophy here is that the doctors want to keep any further injury or damage from occurring in Caitlin's lungs until she totally recovers from the constant difficulties she has had. A review of the Pulmonary Function Tests she took last week also showed little if any improvement, and some type of response should have been shown given the power of this medication.

While we have spoken highly of the results Caitlin has had to Prednisone and how her appetite and weight have thankfully increased, a few months on steroids is quite a different scenario than being on steroids for just a few weeks. Steroids do come with side effects, complications, etc. --- with the most worrisome being the lowered resistance to infections and the fact that any infection would be harder to treat. This longer course of steroids also means that Caitlin will not have her g-tube removed for at least an additional 3 months and perhaps even longer; this surgery will not be done until her doctors are convinced she has an appetite on her own. It also means that there may be a delay in Caitlin's re-vaccinations for childhood diseases, although Dr. Rodriquez did say some immune-system tests could be done to see if she is ready to begin these in a few months. A promise Dan and I made to Caitlin (our secret!) when she was diagnosed with her 2nd cancer must also be put on the back burner for the time being. The other side effects of restlessness and mood swings will just have to be tolerated and understood.

Dr. Rodriquez did also give us happy news --- we will not need to re-visit the Mayo for 8 weeks! We only have to stay the course and hope that no emergency arises!!! Right now we are scrambling to see if Caitlin's IVIG infusion can be accomplished here locally when needed in 4 weeks, but since this has been done for her at Genesis West in the past hopefully we will not have any problem.

Even with the news of 'NO MAYO VISIT FOR 8 WEEKS', Caitlin was still very upset. At this point, she hates her g-tube --- it is an awkward and cumbersome thing and it does interfere with her daily life. I try to remind her of how very far she has come, how many obstacles she has overcome, and I tell her to hang on --- that it'll just be a little longer for things to get back to normal. She is anxious for her old life back and she is tired of having to be careful. She doesn't realize how very much Dan and I hate these things, as well.

A storm is headed into our area tonight; freezing rain followed by several inches and perhaps up to a foot of snow (depending on which way the wind blows). Caitlin is hoping and praying for a 'Snow Day'. You know, it wasn't that long ago when Caitlin used to cry because she just wanted to go to school and couldn't. It's so nice to know that some things, in fact, are very normal in this household...

God Bless!

Friday, December 31, 2004 7:35 AM CST

After our return home last summer, Caitlin and I ran into an acquaintance who had been faithfully reading this journal for many months. Caitlin and I were of course very excited and very happy to be home, and I couldn't help but exclaim "I still can't believe we are here"! This woman quickly responded "It's another one of those miracles". She might as well have put a swear word before the word 'miracles' for the heartlessness and spitefulness that was heard in her tone; needless to say, I was shocked. In the months that have passed since this encounter, I have spent (or wasted) a lot of time thinking about this woman and wondering exactly what she meant. I have even questioned my many references to miracles when writing about Caitlin's journey and wondered if I have portrayed something that people could just not understand or comprehend. Certainly, this is not the life we would have chosen for our daughter or for ourselves. There is no miracle or happy thought that can be found with a cancer diagnosis, and Dan and I do still get angry at what has befallen Caitlin. But what is the miracle is the life that continues for the days, weeks, months, and in Caitlin's case years that follow the initial diagnosis of a potentially and at most times a terminal disease. Considering that Caitlin's initial diagnosis was in the year 2000 and given the fact that we are quickly approaching 2005, we are once again humbled by this miracle called life --- and the life that our daughter has been given. I’m sure I have said this before, but I don't believe either Dan or myself thought she could or would have come this far. We continue to feel blessed at what we have been given! Another miracle is the fact of how very happy Caitlin is; she absolutely loves her life! If asked, I'm quite sure she would say that she wouldn't change a thing --- and she truly means it! It doesn’t matter if my words are ridiculed or misunderstood, we will hold on to our belief in miracles!!!

Our Christmas holiday has been wonderful. We have celebrated just as our tradition has always been (when we've been home, of course) and this in itself was a comfort. The dusting of snow that finally came early Christmas morning just made the day all the more picture-perfect! As always, Caitlin was a very good girl this year and Santa managed to bring every single thing that she had dreamed of. Of course some of our days had to be spent with our extended 'Mayo family', but this was ok too... Santa had left some wonderful presents for Caitlin in Rochester as well!

Caitlin and I are now home after a few, busy days of Mayo appointments. The reports are as always neither good or bad... as I suspect they always will be. The positives are that Caitlin's platelets have recovered and her counts are good; her lymphocytes have also shown continued improvement. Caitlin has finally been released from the fungal infection threat; she had tested positive for Sagrahamala but this is still believed to have been caused by an outside contamination. I was told that Caitlin continues to be followed by Infectious Disease because they want to "Stay in the loop because of her chronic lung disease". Dr. Henry admitted that "None of us have ever really known what is going on in Caitlin's lungs" but that "It's best we follow closely so nothing gets away from us". Several times Graph vs. Host in her lungs was unfortunately mentioned as the possible culprit of recent difficulties. We were also told that Caitlin's lung CT shows resolving infiltrates with new infiltrates also shown --- meaning she is recovering from one thing and something else is brewing. Dr. Matsumoto's radiology report states that lymph nodes previously seen are still present. Dr. Rodriquez from Oncology reports that Caitlin's lungs continue to be the major issue and a concern. Although the course of steroids have helped, Caitlin's lungs continue to sound "junky" to her doctors and there is no explanation for this.

To help get a viable sputum culture, Caitlin was given a treatment on the ‘Vest Airway Clearance System’ used by Cystic Fibrosis patients. The vest is connected by tubes to a generator and while inflated pressure is applied to the chest wall; mucus is loosened and can then be cleared by coughing. Caitlin's entire body shook during this treatment and during the session wearing this vest she carefully cried out "Now I've really been through everything"!!! What was amazing is how well this thing worked and how clear Caitlin sounded afterwards! Dr. Henry even mentioned that she would speak with the team about prescribing a similar device that Caitlin could use at home (this vest system costs $17,000 and I'm sure is only prescribed for CF patients).

Dr. Wylam was not available during our visit, so it was uncertain whether or not Caitlin should continue with steroids; I am awaiting a call with further instructions and in the meantime she will continue to take Prednisone --- but now only every other day. Caitlin has also once again developed Thrush and is back on Diflucan --- indefinitely this time. She was also prescribed Nystatin (that old swish & swallow is back!) and Penicillin; she will continue on Bactrim and Valtrex. During appointments we also spoke of Caitlin's upcoming re-vaccinations for childhood diseases and how this process will hopefully begin in March; unfortunately we were also told that the live-virus vaccinations such as Measles/Mumps/Rubella can not be done until 2-year post transplant. I know I have spoken in the past of how stressed we get at full-body scan for cancer time; now I see the flip side of the coin. Caitlin was not given this type scan and now we are stressed that she wasn’t! This scan will be done during her next Mayo visit. She also received her monthly IVIG infusion and reacted with minor back pain; walking helped and no additional medication was needed. All in all and from our view out of those pink-colored glasses, each step Caitlin takes is a tremendous stride and deserves to be cherished; her reports were not that bad. There was even mention that the team is considering an eight-week span between visits in the near future --- be still our hearts!

There's a lot to be said for "You never truly know a person until you walk around in their shoes". Although those who read this journal catch glimpses into our lives, you truly can never know what our life is like; the same holds true for us. These past few days in Rochester have given us a new perspective on those that care so lovingly for our daughter. One of Caitlin's doctors told us of her trials with recent illness and she shared with us stories of how she was "not a very good patient". She told us of her horrors with diagnostic testing, her experience with a painful spinal tap, and her recovery from surgery. She admitted that tests she has easily ordered for her pediatric patients and that she never previously thought twice about, she now has a deeper and personal knowledge of what has to be endured. As she told us her story, she looked at Caitlin as if in a new light.

We also ran into an old, dear friend ---a nurse who tended Caitlin during her first battle with cancer. This wonderful person was only one of a few at that time that could spark any reaction from Caitlin; Caitlin was then so very sick and was only just beginning to learn how very much she needed these people. But this nurse and Caitlin had a thing going... a teasing kind of joking around thing that always seemed to revive the life in Caitlin every time this woman entered Caitlin's hospital room. She made a profound difference in the quality of Caitlin's life and hence in ours; to this day we remain eternally grateful to this kind soul. When we ran into her, I told her exactly that --- what a big difference she had made in our lives and how we missed seeing her at St. Mary's. This woman broke down and told us how she had to quit her job... she had seen too much... and how she couldn't handle all that the kids had to go through. Caitlin hugged her tightly and thanked her too. I so wish we could have given back what she had so generously given us... and I hope that our simple words and our gratitude made at least a little bit of difference. There's always a different view from another's eyes... and sides you just never think about.

In closing I would like to once again mention our friend Andrew... the young man who had been waiting for a heart in Rochester for a very, long time. He has been taken off the recipient list, and Andrew and his Mom are returning home to Virginia next week. Please help us with prayers for this wonderful family.

Janine

Monday, December 20, 2004 7:01 PM CST

Caitlin is doing great --- she has been full of energy and spunk! Words truly cannot express the relief we feel and how grateful we are. Her course of steroids tends to make her a bit sensitive and she can cry or get angry very easily, but this medicine has helped her tremendously and we are grateful she was prescribed this. Her lungs continue to sound very clear to us.

Also thanks to the medicine, she has put on some much-needed weight --- she now weighs in at 54 lbs.!!! With this added weight and the puffiness in her face due to the Prednisone, she really is looking very healthy --- we don't even care if it's due to the medicine!!! Her appetite has been ferocious, I must say. She has been a terror in the grocery stores, just grabbing for anything that looks delicious. But to see her eat is the true joy! She even just yesterday said to me, "I remember for a long time I would look at people while they ate and I wondered how they could do it without getting nauseous or throwing up". She added, "I think I'm over it now. I still get nauseous once in a while, but I can eat and it feels good to be normal again"! And when I think back, I realize it has been many weeks since she last vomited or asked for Benedryl for nausea at night. This may sound like such a simple thing, but in our world it has been a tremendous hurdle! We pray it continues!!!

I cannot believe that it still appears we will be home for Christmas. We are so close now, and we are still here! It seems it has been many years since we’ve enjoyed a relaxing holiday at home... we are looking forward to this wonderful holiday! We hope you have a wonderful holiday as well!!!

Iowa has been one of the few hold-out states in the country without flu for quite some time. I do see that now, however, there are sporadic reports of this finally in our state. Although we are feeling very good about Caitlin's health right now (and we are anticipating good reports from her upcoming Mayo visit), we do still plan on pulling her out of school for a few weeks once we are notified that children are reporting out due to the flu. This is not what she wants as she is very serious about keeping up with her schoolwork; we, however, are still not willing to take any chances with her.

It has been a while since I’ve spoken of my brother’s death, but I do want to mention once again the miracles of transplant that followed. My sister-in-law periodically gets called with updates on the several recipient’s progress and she recently found out a bit more about the person that received Bobby’s heart; he is a young man in his early thirties with a wife and two small children. He has apparently suffered with his heart condition and has been unable to work for the past six years. I am happy to report that this man is now doing so well with his new heart and his new lease on life, that he will soon be returning to work after many years’ absence! Although the loss of Bobby was and continues to be very difficult, updates like this are wonderful to hear. We continue to pray for our young friend Andrew who has been waiting for a new heart for a very, long time. And we hope that some family sometime soon will hear wonderful stories about Andrew’s progress, and that this will lessen the pain of their recent loss --- as it has done for us.

Along with the happy things noted above I must also say that several young children this week have relapsed, and a few more children have lost their battles. Of course we pray for all of the sick and those that are suffering, but especially dear to us are the children. Please help us with needed prayers for these innocent ones and their families.

As always, thank you for checking in on us today and for your continued love, support, and prayers. Have a wonderful holiday --- and don't forget to hug your children extra tight!!!

Love, Janine

Saturday, December 11, 2004 8:53 AM CST

Each Christmas season in Washington, D.C., the Candlelighters Childhood Cancer Foundation "Erects a tree to honor our children and build awareness of the impact that cancer has upon the lives of thousands of children each year". This 25-foot Childhood Cancer Awareness tree holds thousands of gold ribbons with each bearing the name of a very special child who has or has had cancer. In a ceremony attended by many cancer families and supporters, tonight this magnificent tree will be lit... and amongst the branches and names of the many children honored and remembered tonight, a gold ribbon in honor of Caitlin can be found.

It is expected that thousands of visitors to the Washington, D.C. area will view this tree. With greater public awareness, it is hoped that more funding will be made available and donated for pediatric cancer research; and with this, the hope for a cure continues. Events such as this touch us deeply and I’m sure other ‘cancer families’ as well... for without the hope for a cure and a miracle, we could not do what we do and expect our children to do each and every day.

Caitlin certainly seems well. Her appetite has increased tremendously thanks to her course of steroids and she now finishes every meal --- and then immediately looks for after dinner snacks! For the first time ever, she is now able to eat the entire serving of a children’s meal from any restaurant or fast-food place!!! To say the least, we are thrilled with her appetite and hope it continues --- she does too! Caitlin has said that if she can keep this up, she will surely have her g-tube removed!

I have just today received our next schedule of appointments at the Mayo beginning December 28th. I had not mentioned this, but Caitlin was not scanned for cancer during her last Mayo visit due to this emergency with her lungs (she had, however, been scanned for head and chest). Upcoming appointments include this previously scheduled full-body CT, Pulmonary Function Tests, specialty blood work, IVIG infusion, and visits with both Oncology and Infectious Disease. I was disheartened to see that an appointment with Dr. Henry from Infectious Disease was scheduled; this means Caitlin has not been released from the threat of the fungal infection now hanging over us. With happy news though, Dr. Huettman called us today to let us know that Caitlin’s latest blood culture “Did not grow” --- and news like this is always welcome!

We have certainly been enjoying the preparation for the Christmas holiday and continue to be grateful that it still seems we will be able to enjoy it at home. Never far from our hearts, however, is the thought of last year’s stress and the apprehension felt at Caitlin’s upcoming transplant; we are grateful that she is sitting so much better today. Of course Caitlin still has issues... but we hope and pray for the day when she doesn’t.

One of these days I am going to end this journal --- and I am looking forward to it! We pray for the day when Caitlin is well, there are no issues, and she is considered cured. As with all things in life, it is possible!!!

Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me--
Anything can happen, child,
ANYTHING can be.

--Shel Silverstein
Where the Sidewalk Ends

Have a wonderful holiday!!!

Love as always,

Janine

Monday, December 6, 2004 8:32 PM CST

We had so hoped that Caitlin was doing better, but the battle continues. Last night she had an unexplained and sudden onset high fever which then mysteriously disappeared several hours later. Today she visited Dr. Huettman and under Mayo's order, a blood culture was taken; this will be followed to see if anything grows and we will be instructed should any further treatment be needed. She also was given a 1.5 gram injection of the antibiotic Rocephin into her low back/hip area. The nurse could not understand why Caitlin cried so much --- she said this injection usually did not cause too much pain. But I understood right away; the injection was in one of the almost exact spots Caitlin has had bone marrow aspirations done in the past and this area is now extremely sensitive (even with the passage of several hours, Caitlin still is unable to move very well). Dr. Huettman explained the need for this injection by saying that because Caitlin is on steroids and is now immuno-compromised, should any infection set in it would be difficult to fight. Enough said.

Dr. Huettman also reported that Caitlin's lungs continue to sound "junky"; this was quite a disappointment as Dan and I thought she was doing much better with this issue. But on the positive side, Caitlin weighed in at 50 pounds and we are happy for this --- her weight lately has been consistently in the forties.

We received word that Caitlin's oncologists are "NOT TOO CONCERNED ABOUT THE FUNGAL CULTURE" but that they are "VERY CONCERNED ABOUT THE TEMPERATURE". We do not understand how they couldn’t be worried about this culture --- unless they are convinced the sample was contaminated. We should just take any good news at face value but considering we still have not heard back from Infectious Disease regarding this issue, we continue to remain apprehensive.

All in all and even with all the ups and the downs, we still consider ourselves to be very lucky. There are so many much less fortunate than we. And we are so looking forward to the Christmas holidays --- and the possibility that we may be at home!

Wednesday, December 1, 2004 8:20 PM CST

Today Caitlin was among a few dozen students recognized at Williams Intermediate School for high honors. Yes, it is true --- Caitlin's hard work and her excellent grades have given her high honor status!!! There was an award ceremony held this morning and Dan was in attendance. Caitlin (among others) was presented with a 'Certificate of Excellence' signed by the principal for Honors in the 1st Quarter, 6th Grade! We, of course, are so very proud of our daughter for this fine accomplishment! With all of the troubles Caitlin has had in the past with schoolwork (mainly due to health issues) and considering she has missed two years’ worth of schooling, I'm sure you can all understand why we are so proud! Dan even admitted to shedding a tear or two today during the ceremony. Not only was he moved by the accomplishments Caitlin has attained, he was emotional during the ceremony when the children on stage were asked “Who has goals for the future?” --- and Caitlin was among the few that raised her hand. Although anyone’s future is uncertain, it is moments like this with our child at such high risk that we are shaken to the very core.

Caitlin certainly seems to be doing well. I watch her as she laughs and plays --- and cannot believe that something so ominous could be going on inside of her. Given the fact that her grades are excellent, she now has inexhaustible energy, and that she is eating well, it is hard to understand how she could be so ill. Each day since our return from the Mayo I have put my ear to her back to listen to her lungs as Dr. Wylam showed me --- and Dan now does the same. Over these past few days and thanks to the steroids, each day her lungs have sounded clearer; today only a few pops and whistles can be heard! We are saying our prayers and keeping our fingers crossed too that she is finally on the road to recovery!

We have not yet heard back from anyone at the Mayo regarding Caitlin’s fungal culture. I can only say that we hope we get a phone call saying it was all a mistake; mistakes can and do happen! And even though fungal infections are nasty and do take quite some time to triumph over, they are nevertheless still beatable (thanks, Nancy). As always, we continue to hope for the best.

It is a fine line we walk. Each day we rise and must shine; we go on about our daily lives and responsibilities and somehow we do manage to function --- and even smile while doing it. But in the background always is the threat that constantly hovers over our heads and in our hearts; the clear and ever present danger to our beloved daughter. We sleep with one eye open and must never let our guard down... and we pray.

I have recently read some interesting pediatric cancer facts, and would like to share them with you. Although Caitlin does not fit into any particular category (for she is the rarest of rares), I was extremely upset to read the last fact in this list of facts...

Childhood Cancer Facts

Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.

Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.

Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20f adults with cancer show evidence the disease has spread, yet almost 80f children show that the cancer has spread to distant sites at the time of diagnosis).

Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.

While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80f the time.

Today, up to 75f the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.

Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

As always, thanks for checking in on us today. And thank you for bearing with me when I am down, and listening to my rantings and ravings. Your well wishes and prayers for Caitlin are always appreciated.

Janine

Sunday, November 28, 2004 6:41 PM CST

We had so hoped that Caitlin would have a good report from the Mayo. We had even daringly envisioned a worry-free Christmas holiday and the possibility of being told that Caitlin wouldn't have to return to Rochester for awhile. But unfortunately reality once again slapped us in the face; Caitlin's sputum culture tested positive for a fungal infection... and even this news worsened when we were also told that Caitlin may be suffering from Graft vs. Host disease or having some other type of “immunological response” in her lungs. Dr. Wylam had me put my ear to Caitlin’s back and what I heard horrified me; I can only say that her lungs sound like the cracks of many whips --- and I was able to clearly hear this without the help of a stethoscope. Dr. Wylam then told me that “What you are hearing is not asthma”. We then were told that Caitlin’s blood counts are now “out of whack” and her "platelet count is very low" (I‘ve never known her platelet count to be low other than when she was recovering from chemo). So much for that worry-free holiday.

This was definitely an exhausting and deflating visit. The discussions with Caitlin’s doctors were quite lengthy. But not only were we given the above bad news, we were told a few positive things as well --- and we will cling to these positives! Caitlin's recent CT scan does show improvement in her lungs --- and this apparently is not a typical response to a fungal infection. We were also told that only one colony of fungi was found and this is atypical as well; it is possible that this one colony could be from an outside contamination and not necessarily from within Caitlin (we‘re praying for this!). Although Caitlin never does or has anything in a typical fashion, we are so hoping that the petrie dish was in fact somehow contaminated! It was also noted that Caitlin continues to do extremely well following transplant and that so many other children aren't so lucky; we certainly know this to be true. Dr. Khan said “I’ve done so many of these type transplants and I know. She is doing just great!”

It was decided that a 30-day course of steroids may be beneficial for this issue in Caitlin's lungs; Prednisone has been prescribed. Her blood counts need to be closely monitored, so these will be accomplished here locally with the results faxed to the Mayo. It was also agreed that this lung situation needs to be followed very closely so that "this doesn't get away from us". A repeat CT scan of Caitlin's lungs will be done again in 4 weeks. Dr. Huskins from Infectious Disease said that because the culture is still growing, they as of yet do not know which type fungi it is; hopefully we will have a name for this thing sometime next week. Dr. Huskins said treatment and follow-up care may change when it is known what exactly Caitlin may or may not have.

It was also noted that the recent specialty blood work done on Caitlin’s T-cell and B-cell function show that her B-cell function is now thankfully within normal range. Her T-cell function, however, continues to be low (this is the one we really need to kick in!). She will continue on IVIG up until the time this function shows improvement. Her infusion on Saturday did go well, making this the third consecutive month she has not reacted.

Dr. Khan has scheduled our next Mayo visit for the week of December 27th, so unless there are new developments in Caitlin’s condition it appears that we will in fact be home for Christmas. We are very happy about this --- especially since Caitlin had said she wouldn‘t go if the doctors wanted her up there on Christmas!

Caitlin knew I was very upset at the news received during this Mayo visit and she certainly seemed to understand the gravity of the situation; she whispered on the phone to Nana Elliott that her report “was not good”. Yet she has put on her brave face and has tried so hard to cheer me up since --- she has joked, sang, and made merry! She has also poked some fun at the fact that she will be moody while taking these steroids. I told her we should pin a sign on her shirt forewarning people, and she thinks this sign should say “Excuse my behavior... it’s the roids...!” What a kid!

Dan had been at his Mom’s since Thanksgiving, and I'm happy to say he has had a wonderful time. Brother-in-law Don, myself, and some friends pulled off a surprise birthday party for him this past Friday night --- with band and all! I had hoped that Dan would not be mad at me for planning a party when I couldn’t attend, but it had to be arranged this way --- Friday was the one day I knew Dan would be available since Caitlin and I would be at the Mayo. At other times, he and I have to be available on a moment’s notice for anything and everything! And no, he was not mad... he had the time of his life --- and he certainly deserves it!

In keeping with Caitlin’s mood of merriment, we have today put up our Christmas tree and decorated our house for the holidays. Such a simple thing, yet last year this ritual was so missed! Today has been a very good day. Although we haven’t unpacked our suitcases, our tree is up --- and this is the most important thing!

Just last week Caitlin wrote another letter to her donor. It was the sweetest of letters and in it she wrote “I am feeling much better now thanks to you. I haven’t been in the hospital for a really long time!” When I asked Caitlin why she said this when she was just in the hospital two weeks ago, she answered “He’d think it was his fault and I don’t want him to feel bad!” Bless this child’s heart.

And in closing I have to say that our little buddy Carl passed away this Friday evening. His was a lengthy and brutal fight with cancer, but Carl remained a true warrior throughout --- and he certainly was braver than any child should ever have had to have been. St. Mary’s truly will never be the same without him. Little Carl will be so missed, but never forgotten. Please help us with prayers for the Robinson family, and help us honor the passing of this very brave child.

See www.caringbridge.org/mn/carcar

Monday, November 22, 2004 8:06 PM CST

It has been a fairly quiet week for us. Caitlin is still recovering, and her cough is now much less severe. She does admit, however, to periods of "still getting out of breath". Although we continue to be hopeful that she does not have a fungal infection, we do realize that with these type infections there always is an initial response to antibiotics and then the problem resurfaces. We are once again just waiting to see if and when things develop; only time will tell. We also still have not received word of any culture results, so I'm hoping this is a good sign?!?

We had an issue trying to decide whether to allow Caitlin to return to school or not --- no matter what we did, any decision would not be right. It's like that old saying... "Damned if you do, and damned if you don't". After the school nurse told us that only one child had reported out (and that was due to an injury), we finally relented and let Caitlin return; she was so happy! Honestly, Caitlin just wants to be able to stay in school and have a normal life like other kids!

This desire to “have a normal life” and the lack thereof was painfully clear the other day when Caitlin asked if she could sleep over at a friend’s house... just a simple request. But of course our child is not any normal child --- and I had to tell her “No” because at night she must be hooked up to an IV pole. Caitlin immediately began sobbing and cried that “I miss my regular life”. I can’t tell you how much this broke my heart! Sometimes I feel that we’ve been doing this for so long, that this is our regular life. But with those tears from my child, I can once again clearly see that this is anything but “regular”. Caitlin knows, and she remembers.

The Mayo Clinic has thankfully complied with our wishes, and Caitlin's return appointments are scheduled for this Friday and Saturday. And as I knew it would, Thanksgiving day will be spent on the road headed to Rochester, MN --- and the next few days will be spent holed up in a hotel (but we are splurging and staying in a good one)! I will be taking Caitlin for this visit, and Dan will be staying home --- and enjoying the holiday (along with his birthday) with family and friends. Caitlin’s schedule of appointments is hefty, and I was surprised to see a ‘full body CT’ on her list of appointments (this is in addition to her head CT and a chest CT). Dan and I had not realized that 'scan time for cancer' was upon us once again. Although I have already begun ‘hyperventilating’ about this, we hope and pray for good results --- and the thought that we may enjoy a relaxed Christmas season at home without worry.

I have to tell you, I drive my husband crazy with my remembrance of dates (and if questioned, I bet I could even remember the exact time). I don’t know why these things are so important to me, but I constantly seem to be talking and thinking of “one year ago today” or “8 months ago today” or “four years ago today“, etc. Tonight I am remembering our Thanksgiving Day of one year ago --- and how thankful we were then. And here one year later, we are even more appreciative. As always, the most important thing to us is that Caitlin is still with us --- and that it has been another year. What a long road this has been, but how amazing she continues to be --- and how very grateful we are!

Have a blessed holiday...

Love,

Janine

Tuesday, November 16, 2004 8:24 PM CST

Caitlin is thankfully recovering. She has had no additional fevers, her strength is improving, and her appearance is also much better. Her appetite has not yet returned, so we have been busy trying to 'plump her up' with g-tube feeds. She has also not yet returned to school, although she certainly wants to.

I have called the Mayo a few times trying to get more information about this possibility of an underlying fungal infection but the cultures are not yet in; so we wait. I do not know if you realized the seriousness of that one statement about a possible fungal infection, but Dan and I certainly did. This is the one type infection no one ever wants, because fungal infections are the most serious and the most persistent. We are praying that this is not what is causing the problem in Caitlin's lungs with her recurrent and/or ongoing pneumonia.

Of course I realize that many, many times in the past we have been warned of possibilities, but then these possibilities never became a reality. We are hoping that, as usual, Caitlin's oncologists are once again speaking only of the worst case scenario.

Caitlin did have another chest x-ray taken this week, and Dr. Huettman reported that some improvement was noted (although I don't have too much confidence in the results of x-rays, we are happy with any news of improvement). Dr. Huettman said that Caitlin also sounds much better and this was a tremendous relief! But then he admitted to being concerned about the Mayo's recent report... and the possibility that she may have a fungal infection. This brought us right back to square one!

As always, we thank you for keeping Caitlin in your thoughts and prayers. We also want to thank Jessie for requesting prayers for Caitlin --- and requesting specific prayers that Caitlin truly needs... that "she will stop having complications". And for whoever called WLLR to report that Caitlin is again at the Mayo Clinic, that she has been through enough, and that she needs your prayers. Thank you all for your continued love, support, and the uplifting messages sent our way!!!

Saturday, November 13, 2004 7:14 AM CST

It has been a little over two months since Caitlin had been in the hospital. Everything had been going well... she had just turned thirteen, had a wonderful bowling party, gotten a terrific report card, etc. But once more, the unexpected happened... and she is again ill. We just never know what will happen throughout the course of a single day. As Dan's supervisor so appropriately put it, "What are you going to do when the real sick season is here?" We only wish we knew.

While hospitalized at St. Mary's, Caitlin had a chest CT scan done. It was found that she in fact has double pneumonia --- both lungs are effected. These results are apparently consistent with an acute bacterial pneumonia, but the possibility does exist that she has an underlying subacute fungal infection. Caitlin also had blood and sputum cultures taken, and we are still awaiting results. It is unclear if this is a new case of pneumonia (her third since July) or just the original one persistently hanging on; Dr. Bram did say that "It is a good thing she is 8 months into her transplant". Her fevers continued but finally broke yesterday morning. Although Caitlin had asked for Morphine for back pain, the team would only give her Fentanyl (which is a narcotic itself but somehow milder than Morphine). Because no one knew for sure if she was infectious or not, Caitlin was kept in her hospital room in isolation during the time there. Upon admission, Caitlin weighed in at 48 lbs., but I am sure she weighed much less at dismissal.

Caitlin was given several courses of two different intravenous antibiotics (Ceftriaxone and Levaquin), and she responded quickly. After 24 hours she did feel better. Surprisingly, Caitlin was discharged late yesterday; she and Dan are now home. It is maddening how quickly Caitlin is sometimes discharged, for she is obviously not yet well and certainly she is not yet out of harm's way! Of course she will be under our watchful eye --- and we have been instructed to return to the Mayo should she again spike a fever. She was discharged on oral antibiotics. We also are to bring her to our local physician on Monday, where she will have another chest x-ray done with results faxed to the Mayo.

It had only been a few days since I had seen Caitlin, but I was shocked to see the change that had taken place in her in just those matter of days. She is so thin and now appears to be emaciated. Deep, red circles also appear under and around her eyes. She is also once again nauseous, and the mere thought of food makes her ill. It is frightening how quickly a sickness takes hold ... and gets the best of her. It is also, once again, very clear to us that there is no margin of error with this child.

But of course Caitlin is one tough kid. Upon her arrival home, she immediately asked if she could go out to play!?! Although she is clearly very ill, she just does not want to lose a day! Our immediate answer to her was a very loud “NO!!!” I don’t even believe she will be returning to school next week. I had not mentioned this before but the other morning when she had that 104 degree fever, she cried that she wanted to go to school! She is absolutely amazing!

Dan was originally told that Caitlin would need to be seen again at the Mayo the middle of next week. Although our first responsibility is to our child and we never think twice in an emergency situation, we are in fact trying to work and keep our jobs (and neither one of us has any more leave time); I don't believe the doctors ever think of these things. After some discussion, it was decided that Caitlin could return to the clinic on November 29th (a Monday). Dan remained firm and told the team that November 26th was a holiday for us and that we were available to bring her up then --- and the team agreed to work with us on this! So now thankfully clinic appointments (in addition to chest and head CT scans, and a visit to the pulmonology clinic) are scheduled on this date with her IVIG infusion the following day! Although this will interfere with Thanksgiving (and what is a holiday, after all?), we hope that perhaps we will go a month without any lost time from work!

Mind you, we are not complaining. When we stress out over this fine balancing act we play of juggling work schedules, fighting to maintain normalcy, and fitting in another illness we are foremost grateful for all that we have. And we are reminded of the many parents we know who have lost their child to illness or disease. These parents would give up anything in the world to just be able to spend one other day with that child. So a prayer and a thought forever remains in our hearts --- but for the grace of God, there go I...

Wednesday, November 10, 2004 9:23 PM CST

Our days of relaxation and no worry have to be put off for a bit longer... Caitlin is again ill and has been hospitalized at St. Mary's in Rochester. Dan is with her.

There had been vague signs this past week... nothing too serious when looked at individually. Caitlin had complained of nausea, had been tired, and she had vomited once or twice. These are the normal consequences of illness and treatment that we have grown accustomed to during the past year. But although these occurrences are seemingly normal to us at this point, we never ever by any means should become lackadaisical about these conditions in our child --- at least not yet.

When Caitlin spiked a fever of 104° this morning, Dan took her to see Dr. Huettman here locally. Dr. Huettman ordered a chest x-ray and the results showed pneumonia in Caitlin’s left lobe. Although we had recently been told infections could be treated locally, when notified Dr. Khan from the Mayo insisted that Caitlin be brought to Rochester for treatment (Dan had thought this was because Caitlin’s lungs had sounded so poorly during her last Mayo visit). And although Dr. Huettman reported that Caitlin did not appear to be in respiratory distress, it was noted that she was having significant back pain; Dr. Huettman explained that with severe lung infection this can happen. I can’t recall any other case of pneumonia in Caitlin causing back pain.

Dan and Caitlin have now safely arrived in Rochester and she is presently being evaluated. When Dan called, he told me that upon arrival Caitlin immediately asked for morphine for her back pain --- which apparently is quite significant at this point. I am one anxious Mom, just waiting for the phone to ring with other updates from Dan.

Dr. Huettman had also told Dan that pneumonia in transplant patients is a common occurrence. But what worries me is that this is her third case of pneumonia since Summer --- or is this just the same case of pneumonia that hasn’t yet gone away? And since her Lymphocytes now are within range, why aren’t these precious things fighting infections like they are supposed to?

I had so hoped that after my last update (and it was so positive!) I would not have to write again for a very, long time. One of these days, I will just stop writing and you will know that by my lack of updates Caitlin is well and that there is nothing to write about! We pray for this day!

And in closing, I would like to acknowledge the recent passing of yet another true warrior against cancer --- Alan --- a dear friend’s brother. He fought so long and so hard, and truly earned the title of warrior. He is remembered by the saying “Live each day”. Please help me with prayers for his family....

Thursday, November 4, 2004 6:48 PM CST

Caitlin's recent visit at the Mayo went well. Although she wasn't given an 'excellent bill of health', we are very happy with the 'good' one she received! The best news we heard was that Caitlin's Lymphocytes (white blood cells that fight infections) are much improved. All her life, Caitlin has had a low Lymphocyte count --- in fact, her count has never even been in ‘the range of normality’ that is between 1.2 - 5.2. But guess what? Caitlin NOW MAKES THE RANGE --- her Lymphocyte count is at a whopping 1.58!!! Yeah!!! And our suspicions that she had again grown were correct --- Caitlin has grown an additional 1/4 of an inch and she now is just a hair under 51 inches tall!!! Pretty soon we’ll be able to say goodbye forever to that 50 inches that she’s been at for so many years!!!

Other news received were that yes, Caitlin does have another case of Thrush (this stupid infection is so persistent). She weighed in at only 50 lbs. --- and Dr. Khan was not pleased at all. Dr. Khan gave Caitlin a firm talking-to about the need to put on weight and the need for her to eat well. Caitlin’s liver enzymes are still somewhat elevated, but all other blood counts looked good. Her lungs continue to sound horrible and her cough is just as bad; she will be scheduled with her pulmonologist in 4 weeks --- but should any problems arise in the meantime, of course, we know who to call. No, she may not have a pneumonia vaccine --- it’s much too soon (hopefully Caitlin will receive all of her normal childhood vaccinations in the Spring). And yes, she may now visit her dentist without any special instructions. Dr. Khan was happy that Caitlin has not shown any signs of Graft vs. Host, and she said that at this point we just do not want to see any reaction whatsoever to the transplant. Specialty blood work was also done and we are awaiting results to see if Caitlin still needs IVIG infusions.

Caitlin also had her gastric balloon and Mickey button replaced and this procedure did not hurt her at all. She said it “Only felt like a pinch”! Without getting too graphic here, Caitlin reported that after the old tube was removed she was able to look right into her stomach --- and she thought it was fascinating! She also was enthralled with what was taken out of her stomach and even asked “Can I bring this old one home for my Mom to see?” Thankfully she was told “No”!!! Dan and Nana Couppee were a bit sickened by the whole thing and just had to look the other way; I would have done the very same thing. Anyway, her g-tube is now good for another 3 - 6 months and hopefully by that time she’ll just have it permanently removed.

It has been a few months since I have taken Caitlin to the Mayo. I was told many asked about me and it is good to know that I am missed! It’s funny though, one of the doctors asked “Is your Mom not worried about you anymore?” Caitlin emphatically told them “No --- she worries all the time!” Dan had to explain that now that I have gone back to work he is trying to keep me there. Hopefully, they understood.

I have just today received Caitlin’s report cards for the first semester of school, and I have to tell you --- I am one very proud and happy Mom. I cannot wait for Dan to call tonight to tell him how good Caitlin has done! Her grades are excellent --- better than ever! They are as follows: A, A-, (2) B plus, B, and (2) B minus!!! Tonight my mind races back to that phone conversation I had with her teacher from last year; she had called in mid-September to report that Caitlin’s grades were all D’s and F’s. I was then quietly asked “Is something going on?“ That was the point when I realized Caitlin’s cancer had returned. So words cannot properly express what getting this fine report card today truly means.

Caitlin will be thirteen on Saturday. Though it is hard to believe she will be a teenager, we are so happy that she has reached such a fine age! We have planned a bowling party for her --- and she is looking forward to it! We are looking forward to it too --- more than you could know!!!

Tomorrow marks the 13th month anniversary of Caitlin’s diagnosis with a second cancer, and it also marks the 8th month anniversary of her transplant. Had I been asked a year ago if I’d be writing about her still today, I’m not sure how I would have answered. But I remain grateful, humbled, and awestruck that my child is still amongst us. As always life and death remains a mystery... and although it can be maddening, life in itself is very rewarding --- especially when you fight so hard to keep it. I repeat a saying that I happened upon the other day... something so appropriate... and something that Dan and I need to learn from... TODAY IS THE TOMORROW WE WORRIED ABOUT YESTERDAY.

Perhaps with all our good news and from here, Dan and I can somehow learn to relax...

Love, Janine

Sunday, October 31, 2004 5:18 PM CST

Two weeks ago, Dr. Khan from the Mayo sent a letter to our local physician which stated:

Dear Dr. Huettman,

Caitlin Couppee is a 12-year old girl who is status post unrelated bone marrow/stem cell transplant for recurrent Non-Hodgkin's Lymphoma and chronic Variable Immunodeficiency. Because of her compromised immune system, I feel that Caitlin’s parents, Dan and Janine Couppee, should also receive a flu shot.

Sincerely...

Because of this note, Dan and I were included on the list of patients to receive these shots that are now so little in supply. On the day of our appointment, however, we had second thoughts when we saw the many elderly and those obviously ill waiting in line for their turn. When we expressed our hesitation, Dr. Huettman explained that “I have no problem in giving you two flu shots. The whole purpose of these shots is to prevent disease, and we are preventing disease in Caitlin. And you two are her shield.” Enough said! We ended up getting our flu shots after all --- and thanked our lucky stars!

As far as trick or treating goes, in the end we let our hearts make the decision --- not our heads. Caitlin was so excited when we finally relented on this issue!!! She went out with cousins Steven and Darien and a group of her favorite neighborhood friends. They all had a great time! And this was the first year that we allowed her to go out without any adults! Of course Mom and Dad were nervous wrecks, but we ended up surviving the night!

Prior to any Mayo visit, Dan and I always formulate a series of new questions that we have. We also write down what we need to let her team know. Our questions and comments for the upcoming visit are as follows:

--- Caitlin has never had any sign of Graft vs. Host disease... we were
told you wanted to see some of this to make sure the new immune
system was working. So what does this mean?

--- How are Caitlin's lymphocytes? Is her immune system stronger than it was before and would this mean she is less susceptible to cancer? How are her liver enzymes?

--- Can Caitlin visit the dentist now and should he have any special instructions?

--- Please have Norma write down how much Caitlin weighs and how tall she is. We think she has grown again!

--- Caitlin needs a prescription of Diflucan for thrush. Can we have an ongoing prescription because this happens so frequently?

--- Should Caitlin have another pneumonia vaccine? Would it work?

--- Caitlin's cough is bad and she has had a cold for quite some time. Should she be scheduled with Dr. Wylam?

--- Other than her recent sinus infection, Caitlin has done well this month! She only occasionally complains of nausea. She has thrown up only due to cough.

The question that we don't ask --- the question uppermost on our minds and the one that no one can ever answer --- is does she now have a chance? Has everything been done? I am not whining, nor am I complaining. I just wish someone could tell us that from here everything is going to be ok. But this week does mark the 8th month anniversary of her transplant --- and given this fact it seems Dan and I don’t have to remind ourselves to breathe quite nearly as often as we used too!

Dan, Nana Couppee, and Caitlin left early this morning for the Mayo. I have just now spoken with them, and all is well. Caitlin is three hours into her IVIG infusion and as of yet she has not had a reaction! This will be two months in a row that she has not seriously reacted to IVIG! We take this as a very good sign!

Thursday, October 28, 2004 7:45 PM CDT

Although a sinus infection is not terribly worrisome, Caitlin's recent infection was hard to beat. For a few days Dan and I even worried that more may have been going on, for she once again developed those dark circles under her eyes, was lethargic, and looked extremely thin and unhealthy. But given some time, however, Caitlin finally now seems better and she looks a bit healthier.

It is amazing that we have managed to go an entire month without an emergency visit to the Mayo. Dan and I hope that this is a sign of easier times ahead!?! Caitlin is due for her routine checkup and IVIG infusion this coming weekend --- she's spent the past four Halloween's up there, why should this year be any different? She is also scheduled for a small procedure --- to replace her g-tube balloon with a new one. I know Caitlin is disappointed, but she realizes that she is just not at the point of being able to survive on the little she manages to eat; this balloon replacement is absolutely necessary. Dan and Nana Couppee will be taking her up to Rochester on Sunday, and with Nana along Caitlin is sure to have some fun too.

Trick or Treat in our area is scheduled for Saturday night. Dan and I are at odds on whether or not we should allow Caitlin to participate. While I don’t want to involve anyone in our 'discussions' about this, suffice to say that we have not made any decisions about it nor have any pros or cons outweighed the other. Although this holiday means the world to Caitlin, Dan and I wish that we did not have to have such an issue over a trivial thing like Trick or Treat.

While concerns at school had seemed to be simmering down for Caitlin, teasing unfortunately had picked up for cousin Steven (Caitlin’s staunch supporter!). Many ugly words had been said. I know this issue has been an extremely sensitive and difficult thing for Williams School, but they have come through once again. Apparently during the time Caitlin was absent from school last week an announcement was made over the school’s intercom system --- notifying all that Steven’s family was in fact NOT A DISEASE! All were informed that this behavior and this teasing was to stop immediately. Hopefully, we have seen and heard the last of this type trouble at school...

We somehow have managed to have a bit of luck. Our bill for hospital services (this does not include doctor’s charges nor does it include the donor‘s charges) performed for Caitlin during those 3 1/2 weeks at the transplant center in February/March has finally come through... and although we had been told we would owe our usual 10 - 20 percent the bill and settlement from insurance showed that we don’t owe a thing! I don’t know how this is possible, but I will not be calling to ask questions!!! Anyway, for those of you that have never seen an astronomical bill for medical care here is the hospital tally...

Medical Care $59,375.00
Prescription Drug 43,648.73
Medical Equipment 31.00 (yeah right)
Diagnostic Test 17,011.00
X-ray 2,842.50
Radiation Therapy 6,835.00 (surprisingly cheap)
Surgery 3,195.00
Whole Blood 2,945.00
Medical Care (Misc) 375.00
Surgery 81,367.18 (this must have been the stem cells) ---------------

TOTAL $217,625.41

I don’t know why I am sharing this information... but to let you know we have boxes and boxes full of EOB’s such as this. I guess the most amazing thing about this statement was the grand total for prescription drugs that Caitlin had during that time.

My family continues to deal with the sudden death of brother Bobby. Many attended the service on Saturday, and it was apparently very touching and emotional. I truly am sorry I could not attend. I continue to worry about his family, and my Mom...

All else is well, and we go on with our gratitude and appreciation for the life that has been given us --- and most importantly the life that has been given our daughter. We hope and pray that her infections get fewer and farther between... that she grows stronger every day... and that cancer never finds a way to return. We pray for those that are less fortunate... and hold many close in our hearts. And as always tonight we remember those children fighting the fight... those especially dear to us... Carl, Cloe, Michelle, Meg, Katelyn, Madison, Gabrielle, and always Andrew... please remember them in your prayers as well.

Thanks for checking in on Caitlin today...

Love, Janine

Wednesday, October 20, 2004 8:36 PM CDT

It has been a very difficult week; there has been so much going on and too many emotions to deal with. When it finally truly hit me about Bobby, I admit to being depressed. Really --- there is only so much a person or a family can take.

But there was another plan in motion, and I was quickly snapped back into focus --- Caitlin once again began having fevers. When I got the call on Monday from the school nurse I wasn‘t surprised; Caitlin had had a fever over the weekend. And with that call I felt in my heart another Mayo trip was inevitable. But to our surprise there was good news to be had --- when Dan spoke with Dr. Khan from the Mayo she reported that, "We have to start trying to treat Caitlin like a normal child. Have her seen by your local physician and have this infection treated locally". Be still our hearts! It didn’t even matter that Dr. Khan wanted a phone call from Dr. Huettman regarding what was going on --- Caitlin could be treated at home! And in the end, it turned out that Caitlin just had a sinus infection --- something easily fixed and not life-threatening! She has been quite ill this week and we have been concerned; she has been white as a ghost (even her arms!), she’s not been able to go to school, she has had severe headaches, and her temperature got as high as 103°. But she’s being treated locally as a normal child! And the Augmentin she’s been on seems to finally be doing the trick!

My heart just breaks for my brother’s family... and for my mother. I cannot even imagine the pain. All have been surrounded by loved ones, and it seems the children in our family are helping the most. I know my Mom has taken great comfort with the visits from great grandchildren Grace and Lorenzo. Even phone conversations with Caitlin this week seem to be helping ... these two have had several, serious, quiet talks this week.

I have decided not to risk attending the mass for my brother this coming weekend. Although this was a hard decision to make and I’m not necessarily comfortable with the decision, I still feel it is the right thing to do. With Caitlin’s issues still ongoing, I would be terrified to take her with me to New Hampshire... and I would be petrified to take her so far away from the Mayo. I hope I am forgiven.

And in closing I have to say that on the very day my brother died, his heart beat strongly in someone else. I cannot tell you how much peace this brings me.

Saturday, October 16, 2004 8:55 PM CDT

On Thursday, my brother Bobby had a spontaneous bleed that went into his brain stem. He went into a coma and although every effort was made to save him, he passed quietly today without ever having regained consciousness. He had not been ill, nor had there been any forewarning of what was to come. He never knew for a moment what had happened, and thankfully he did not suffer.

As always with death, the true pain will be for those left behind. For his wife, who had thought their lives together still stretched long before them. For his daughters, who will now always long for his needed love and clever guidance. For his new granddaughter, who will grow up missing having known him. For my mother, who within these past several years has had to bury her own husband and now two children. For my sisters, who have still not gotten over the death of our sister Peggy. Shock and unbearable pain remains for those left behind, and there will never be an answer to the question "Why"? I had intended to write in this journal and ask all to storm Heaven with prayers for him, but Bobby's death was so sudden.

Life can and does change so quickly. But for Bobby and for those left behind to grieve him, there will never be an opportunity to tie up loose ends, tell someone "I love you", make amends, or say goodbye.

Caitlin is deeply affected by Uncle Bobby's passing, but with all that she has been through she has acquired a wonderful way of looking at death. She told my Mom an endearing story of how Grampy Elliott must have been lonely in Heaven and how now he must be so happy that he has his son with him. Caitlin said that she knows Grampy and Bobby are now having a big golf tournament in Heaven, and that poor Auntie Peggy has to watch. And she told my Mom, "Not to worry, we'll all be together again sometime".

Bobby was an organ donor. Today all over the country and perhaps the world ill patients received phone calls from transplant coordinators giving them the happy news that today was the day they would receive their much-awaited new kidney, heart, liver, lungs, small intestines, or eyes; today is the day that many will live on thanks to my brother. Bobby has given the ultimate of gifts... the gift of life. I am so happy that he did this.

After reading these words, I hope that all of you hug your loved ones a little tighter tonight... and tomorrow too. I hope that you never miss out on an opportunity to call someone you are thinking of, nor let the chance to tell someone you love them exactly that. Life is a gift, and no one knows how long they have been given. Enjoy each and every day --- when you have it.

I love you Bobby.

Janine

“TO REMEMBER ME"

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has ended. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber, and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.

Give my sins to the devil.

Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

~ By Robert N. Test

Sunday, October 10, 2004 9:54 PM CDT

The long days of summer are past, and with that the danger of West Nile virus is thankfully gone. But with another season upon us, a new threat has surfaced --- this shortage of flu vaccine that we all are certainly worried about. And it is definitely a worry in this household!

Thankfully, Caitlin did receive her flu shot while at the Mayo last week (whether it will help or not is yet to be seen). Although I have made many calls to Dr. Huettman’s office, to the Mayo, and to several different organizations Dan and I have been unable to even get on anyone’s list for possible shots! We were even willing to drive to Rochester, MN to get these, but we were told the Mayo physician’s hands are also tied (we have been given these shots in the past as family members of those at risk). Certainly Dan and I are healthy, ’almost’ young people who under normal circumstances would not need these shots. We would happily and of course stand aside to let those at risk get these shots before us. But as the caretakers of an immune-suppressed and an at-risk child we did think we should at least be able to get on someone’s list. Not so! Because of the shortage, guidelines are very strict. I cannot tell you how worried we are, because when Caitlin has had the flu in the past it is never a normal, easy case. With all that she has been through this past year, I have no idea what this year’s flu would do to her.

I have just now heard that September was ’Pediatric Cancer Awareness Month’. Perhaps we’ve been living in our own little world, but honestly we had not heard a thing about this until now! But while I feel this was little publicized and little heard about, I am happy to know that the on-going campaign to promote awareness of Primary Immunodeficiency Diseases is now finally making headway. The first National Public Service advertising campaign for PID has had many television airings and radio broadcasts. There has also been a mass mailing to pediatricians, specialists, and nurses informing them of the ten warning signs of PID’s. The hope here is that with early diagnosis of a primary immunodeficiency those affected can receive appropriate treatment which would help prevent them from becoming more seriously ill. Had Caitlin’s physicians from years past only recognized the signs or had Dan and I only known that such a thing as a PID existed, perhaps she could have been saved from her two battles with cancer; maybe her life would have been much different. But while it is too late to go back in time for our daughter, I am happy to know that conceivably other children can be spared from the many battles our daughter has had to endure.

There are so many causes --- and so many battles yet to fight. We have walked in the ’Light the Night’ campaign for the Leukemia and Lymphoma Society and have raised monies. But there is much left to do; so many causes and so little time. Dan and I have many wishes that we want to fulfill in our lifetime, and so many debts to repay. We hope and pray that we can accomplish them all --- in our daughter’s honor.

Caitlin remains well, and has enjoyed a four-day vacation from school. Her energy has been endless! Dan and I are happy to say that we feel good about her health in general right now!

The 10 warning signs of a Primary Immune Deficiency Disease are...

1. Eight or more new ear infections within one year.
2. Two or more serious sinus infections within 1 year.
3. Two or more months on antibiotics with little effect.
4. Two or more pneumonias within one year.
5. Failure of an infant to gain weight or grow normally.
6. Recurrent, deep skin or organ abscesses.
7. Persistent thrush in the mouth or elsewhere on the skin, after age 1.
8. Need for intravenous antibiotics to clear infection.
9. Two or more deep-seated infections such as sepsis, meningitis or cellulitis.
10. A family history of primary immune deficiency.

Tuesday, October 5, 2004 7:20 PM CDT

Be still our hearts! Caitlin has had a good report from her Mayo visit --- and she and Dan have already returned home! Truly, the report was much better than we expected it would be especially since Caitlin has another cold! And although I hate to brag and sometimes I worry that I may jinx us, I just have to say that it appears things seem to finally be turning around for our daughter. Her recovery really seems to be picking up speed now! Caitlin does not even have to have lab work done here locally in two weeks --- we are just to return to the Mayo in our normal four weeks!!!

Her IVIG infusion on Sunday went without a hitch --- and without a reaction! This is the first infusion in a very, very, long time that Caitlin has not had a severe reaction to! She was also infused in minimal time --- only five hours! Her Pulmonary Function Tests actually showed some improvement and although her lungs still continue to be a concern , Dr. Khan was generally pleased (I do know, however, that Caitlin was very sick the last time she had PFT's and that that report was very poor). Her chest x-ray was also thankfully normal. Dr. Khan also reported that blood tests and lab work show continued improvement! And although the team is uncertain if this would help or not (due to her antibody problem), Caitlin did in fact receive a flu shot.

As I’ve mentioned, Caitlin has really been doing well with normal eating and of course she was happy to report this good news to her doctor. Dr. Khan was thrilled as well, but said that it was much too soon for Caitlin to have her g-tube removed. She explained, “Caitlin, you only weigh 49 pounds! You must put on some weight before we will even consider taking this out!“ Although Caitlin was disappointed initially, she has since set a different date for her new goal --- the first of the year! Secretly Dan and I are relieved, for this tube is our ‘insurance policy’ that Caitlin can get whatever she needs no matter what happens.

She was also seen in the Department of Ophthalmology. I don’t know if I’ve ever mentioned this before, but Caitlin has been under the care of Dr. Mohney for several years now. One of the chemotherapy agents Caitlin received four years ago from her CHOP protocol damaged her tear ducts and her eyes have suffered some scarring. She has had plugs surgically put in both eyes twice, but these procedures have not been successful. For the rest of her life, she must have natural tear drops put in her eyes several times throughout the day or we are told she could be blinded. Believe me, these drops are never forgotten! And truly, we consider this a very small price to pay!

Caitlin’s Individualized Education Plan (IEP) meeting was held yesterday at Williams’ School. I was so happy to hear how well she is doing! Of course it will take some time for Cait to get caught up with her 6th grade classmates (she has, after all, missed two years‘ schooling!), but I was told she is trying really hard and that she seems to really want to learn! But the very best news I heard was in learning of Caitlin’s grades and although these are ‘adjusted grades‘, they are the best grades she has ever gotten! And they just screamed out to me that CAITLIN IS FEELING GOOD AND THAT CAITLIN IS HEALTHY!!! YEAH!!!

Thank you all very much for your response to my question of what to do about the teasing at school. Your words were very much appreciated, and some even brought tears to my eyes! Caitlin enjoyed them as well, but was perplexed as to why I would think any problem was going on?!? She has now reported that there is no issue at school, and that she can handle anything that is thrown at her! Honestly, I don’t know if she felt this way before or after hearing you words!!! So thank you!!!

Monday, September 27, 2004 8:30 PM CDT

It has been a wonderful week! And what a good thing it is that I haven't felt the need to write --- because there hasn't been too much to report! Caitlin continues to do well and is full of energy. She has also begun normal eating at all three meals; this week we have seen her eat more than we have in a year! She has been doing so well that we have even skipped g-tube feeds for a few days! Caitlin has set a goal; she wants to have this tube removed before her thirteenth birthday --- and her birthday is only 5 weeks away! You go girl!!!

Dan and Caitlin are headed back to the Mayo this weekend. She is due at St. Mary's this Sunday for blood work and her monthly IVIG infusion. Monday and possibly Tuesday will be spent at the clinic, and as usual Dan and I are a bit anxious for these appointments. I will once again stay behind; I am scheduled at Williams School for Caitlin’s yearly IEP conference on Monday followed by parent/teacher conferences. She has brought home several papers with A's --- so I don't believe I'll be getting any bad news!

Minor issues do continue, however. After her course of Levaquin ran out, her terrible cough did unfortunately return. This last bout of pneumonia continues to plague her, although thankfully she has not had accompanying fevers. At night when she sleeps, she must be propped up on pillows; this seems to help somewhat. And although she continues to use her Flovent and Albuterol, it hardly seems that these inhalers do her any good. Last week's chest x-ray results were fine, and Dr. Huettman reported that her blood work was surprisingly good. This must have been true, because no Mayo doctor called us --- what a relief! Also, Caitlin still has not complained of any further belly troubles!

Caitlin continues to get teased at school for her small size and it has now gotten to the point where she is fighting back and yelling at the kids that tease her. Cousin Steven even helps in this effort! I don’t know if this is a good or a bad thing?!? Several weeks ago staff from Williams School called me with concern over this issue; I assured them that if things got serious I would be the first in line to let them know. I also explained that it was Caitlin’s decision not to tell on any of the students, and that Dan and I stand behind her 100% in this decision (she is allowed to make so few decisions in her life). But now I am beginning to get worried and am at a loss of what to do. I will never understand how on earth kids can be so mean and how they can tease a child that has been through so much? It certainly is not her fault that she is tiny!!! Can anyone offer some words of wisdom???

The small things I have talked about today are just that... small. We continue to thank our lucky stars and the Lord above for Caitlin’s progress following her treatment and recent stem cell transplant. It’s hard to find the proper words for this, but truly it is amazing that she is still with us. During the past few months several children I know of have passed due to complications from these types of transplant --- from life threatening infections, internal bleeding that could not be stopped, and from kidney failure. That halo I’ve spoken about in the past continues to surround us.

Janine

Thursday, September 16, 2004 8:43 PM CDT

It has been a wonderful and thankfully quiet week for us. Caitlin is feeling and doing terrific --- and she has had no complaints about anything! I hardly dare say this and in fact I'm only whispering, but this week we are living life normally! Knock on wood!!!

Caitlin is due Monday at our local hospital Genesis West for repeat blood work and a chest x-ray, with the results to be sent to the Mayo; her pneumonia still continues to be closely monitored. The additional course of Levaquin ends tomorrow and we are hoping the extra 10 days has done the trick for her. Pending appointments in Rochester are scheduled during the first week in October, and hopefully we’ll not have any surprise visits in between. These are easy things!

Caitlin has been to school every day this week, and it appears that she'll be going tomorrow as well. Each day upon her return home she's had something new and exciting to report! One day this week someone from Williams School surprised her with the gift of a small-sized t-shirt imprinted with 'WILLIAMS HORNETS' --- and although she can't seem to recall who gave it to her, it certainly meant a lot! This week she also brought home several papers graded with A's (ok, so we'll not think about that D)! And one of her teachers today said, "Caitlin, all of the teachers here are impressed with you"! That one simple sentence has seemed to instill a tremendous amount of confidence in her and an excitement for her new school! She also was invited to join the Chorus and has this week attended two practices; she said that it is hard, but she loves it! And although she continues to be teased about her size, now that most of the students have seen her this teasing seems to be much less frequent. She also has, however, begun getting complimented --- one upperclassman apparently said to her "Hey, I've seen you around. You're cool"! As Dan later said, "Wait until they get to know her"!!! This school thing is truly working out!!!

Since Caitlin's birth and beginning with her first hospitalization at one month old, I don't believe we've ever had a year without some sort of medical crisis. And although her recurrence of Non-Hodgkin's Lymphoma is by far the most serious of calamities, we remain hopeful that with all she has been through she has ultimately been cured. Caitlin has now attained the status of 6 months post transplant and with this Dan, myself, and all that love her can breathe a bit easier. Dan and I do realize that she will have issues to deal with in the future and perhaps even for the rest of her life, but we hope and pray that with the passage of time the less frequent and the less serious these issues will become.

To that ultimate end, we hope that soon we will no longer have to think of Caitlin as a disabled or sickly child --- and what a wonderful thought that is!!! But for the time being I want to repeat for you the words from someone that knows all too well what it’s like to have a sick child. For those of you that dare, read on....

Welcome To Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

... and that’s where we are at right now --- enjoying Holland.

God bless!

Janine

P.S. If you want to check out a really cool picture of Caitlin and her really cool friend Jessie, go to www.caringbridge.com/mn/jaws

Friday, September 10, 2004 7:13 PM CDT

I am so happy to report that Caitlin has responded quickly to the additional course of Levaquin! Within 12 hours of taking that first pill, her cough miraculously disappeared and the fever never returned. We kept her home from school for the remainder of the week --- just to be on the safe side. And although she was not happy with this, we felt it best she stay quiet and recuperate. We have also kept her feeds going 24 hours per day; even with the recent growth spurt her weight has dwindled down to 46 lbs. She certainly needs this extra nutrition! Thankfully, her Lidocaine and steroid injection continues to work as she still has not mentioned any abdominal pain.

After the passing of 48 hours with no fever from Caitlin, today Dan and I have finally felt a bit of relief from stress and worry. Apparently this must have been obvious, because my co-workers and friends reported that I was like a different person today! And when I called home, Dan was a different person too! He was so excited to tell me that "Caitlin is playing, doing crafts, and is feeling just great!" He also has asked for a date with me tomorrow night to go out after he gets off from work! Honestly, I can't remember the last time or in what year this last happened!!! And because Caitlin is feeling so terrific, she is now out playing with friends after her very long week.

So as things turned out we did not make that trip to the Mayo this week and while I am grateful, in the long run we truly didn't save all that much. Dan and I worried so much about Caitlin that we have not slept; in fact, Wednesday night I just sat by her and watched as she slept. To us our plan was logical (Caitlin did have three bouts with the Shingles), but we had also realized that if her fever returned we would ultimately be making that road trip; we are so grateful it worked out. But during the past few days we have also realized that we do not like 'playing doctor' (we continue to think long and hard about sending her to school and allowing her out into the world but we always do, however, defer to her doctors' decision and the fact that without this she would have no quality of life). Technically, we should have reported the fever to her Mayo doctors right away and we did not --- although we did call our local physician. I called the Mayo only today and reported her brief fever and to say that she is now fine. I also let them know my concern over what will happen when this course of antibiotics is done. Let me tell you, I will NEVER not report something like this again. I spoke with one of the Oncology Nurses and she was definitely not pleased. She said that, "I will report this at checkout tonight and hopefully by the time the doctors see you they will have calmed down" --- and she was not kidding!

While Dan and I certainly feel that we are capable of making decisions about our daughter and her health condition and feel we know what is an emergency situation and what is not, apparently this week we have made a bad call. In our defense, however, I may just have to remind the team that Caitlin had a fever at Camp Jornada and all they did was give her Tylenol and wait it out! In the meantime, I admit to hating to be in trouble with these people.

Thank you all for your continuing support and love for our daughter. It is amazing to me that so many continue to check up on her! I often wonder why anyone would want to know all about these ups and downs we constantly seem to go through!?!

Wednesday, September 8, 2004 10:58 PM CDT

In looking back, I realize how silly I was this past June when I tried to sign off from this journal --- I have made so many entries since then. But because we were allowed to return home, we had hoped all would be relatively well from that point. Needless to say, much has happened since then and to me now it seems inevitable that more is to come. Although we continue to 'will' an end to Caitlin’s journey, it appears that we truly have not had much luck in this 'willing' department.

Caitlin was able to return to school on Tuesday. She couldn’t even believe that I asked her if she felt up to it!!! “Of course I’m going to school”, she said! Caitlin had a wonderful time and was so happy at days’ end! I was thrilled to see that she now seems to have acclimated herself just fine to this new school! Tuesday afternoon she played with her neighborhood friends and was full of energy. Come Wednesday morning, however, Caitlin again developed a low-grade fever. This is not unusual, so we gave her a dose of Tylenol and kept her home from school (she was upset to be missing school pictures). Because Caitlin’s course of Levaquin for her pneumonia had just ended, we wondered if this had something to do with the fever. Thankfully, we were able to get a prescription from Dr. Huettman for an additional ten days. Caitlin was fine throughout the day, but tonight she once again has a fever. She also had a pretty severe coughing fit which unfortunately brought on a vomiting spell. There have been no complaints of belly trouble or pain, and she has been able to take feeds although at a low dose. Dan and I are hoping for the best, but as he so appropriately said “right now we are teetering”.

I don’t know if we will have to return to Rochester tomorrow. But this, of course, does seem to be a possibility. I remember so well Caitlin’s team forewarning us that her transplant may be more difficult and would be harder to recover from because of her immune deficiency disease. Perhaps they meant this lengthy recovery period and/or these never-ending small problems?

Our trips to Rochester seem to be getting more frequent and the problems seem non-stop. Caitlin just does not seem to get a break! Sometimes I wonder if things were easier when we just lived there and had the emergency room only two blocks away? But for tonight we are hoping the antibiotic will do the trick and that Caitlin will wake up tomorrow morning feeling just great (she always does surprise us, you know). And although we tire of these trips to the Mayo and all that Caitlin goes through, we trust that the good Lord realizes we are definately not 'too tired of it all'.

Monday, September 6, 2004 8:00 AM CDT

We have returned home after a worrisome several days’ stay at St. Mary’s Hospital. Needless to say, we are extremely happy at Caitlin’s escape --- and grateful that this recent incident was not the return of her cancer or the development of another abdominal blockage. We hope and pray that Caitlin continues to get stronger in her recovery.

It all began simply enough --- with Caitlin reporting Wednesday night that, “I have a bellyache”. Her nighttime feeds were turned down very low and she did sleep through the night. Thursday morning she ate breakfast, and then began her school day as usual. But by 10:00 AM she reported to the school nurse, by 10:30 Dan had picked her up at school, by 11:00 she was screaming in pain, and by 11:30 she was seen by our local physician Dr. Huettman. From what Dan has told me, Dr. Huettman was very concerned at Caitlin’s condition --- and basically said immediately that “she needs to be at the Mayo”. Dr. Huettman called Dr. Anderson who reiterated that very same fact, “Tell Mom and Dad to get her here immediately. We’ll direct admit her into St. Mary’s. She may have developed another blockage.” When Dan called me at work at noontime he said that he could handle this and I was to stay at work. After a bit of persuasion from my co-workers I was, of course, on my way home. I could not believe Caitlin’s condition when I saw her; at this point she was now doubled over in pain and screaming that “I thought I’d never have to feel this pain again! Why won‘t it leave me alone?” I gave her the only medications available to us at the time; the muscle-relaxer Ativan, Tylenol, and a large dose of Benedryl that I hoped would help her sleep. Dan and I quickly packed (and in my mind we were packing for several months) and we basically threw things into our vehicle. By 1:15 PM we were headed back to Rochester.

The traffic was horrible and Dan swore most of the way. I swore too, because it seemed to me that Caitlin should have been picked up by Mayo 1 (their helicopter). In between brief periods of dozing, Caitlin screamed non-stop. Dan relayed that Dr. Anderson had said, “If you have any problems along the way, call the hospital and we will arrange for an ambulance to pick her up”. It did not seem that we had time to wait for an ambulance. Along route, we were stopped for speeding by a state trooper (imagine that). This poor guy! When he approached our vehicle, all three of us were screaming at him at the same time! Caitlin was screaming the loudest that, “my belly hurts!” Thankfully, this man sensed our panic --- and kindly let us go with just a warning to “slow it down”. Although we did slow it down somewhat, we managed to arrive at St. Mary’s within 4 ½ hours.

Caitlin continued to scream upon our arrival, up until her veins were accessed and she was given her first dose of Morphine (these continued every two hours thereafter). Once in her hospital room, we had the normal visits from the floor resident, oncology, the surgical team, GI, dietary, etc. Caitlin had an abdominal x-ray and an abdominal CT scan, thankfully with normal results. Given these normal results and due to the fact that Caitlin could actually point to the one area in her belly that was causing her pain, we were told that the team felt it possible that Caitlin had pulled a muscle or had torn tissue in her abdominal wall due to severe cough from the pneumonia she has been recovering from. Unfortunately, we were also told that the team could not be totally sure that this was the case. It was suggested that Caitlin be given a deep, subcutaneous injection into her belly of Lidocaine and steroids to freeze the area; it was hoped that when the area returned to normal feelings that whatever was torn would have had a chance to heal. Although this was a simple procedure and would in fact take only about five minutes to accomplish, upon hearing this news Caitlin once again became hysterical. She absolutely refused to allow this to be done --- unless she was put to sleep (I think that at this point, Caitlin has had enough and just wants to sleep through everything). After some discussion amongst the team, Caitlin was once again allowed this comfort; she was actually taken down to the surgical floor were she was anesthetized. This simple five minute procedure turned into a several hours’ ordeal! Later, Dan and I had a firm discussion with Caitlin about her behavior --- and the fact that anesthesia is in itself dangerous --- especially to someone like Caitlin who has chronic lung damage and is recovering from pneumonia! We told her that throwing fits is no longer “acceptable behavior” and that if she has a problem with any pending procedures we will discuss it as adults after the team has had their say and left the room. Although it breaks our hearts when she worries so, we felt we just had to have this discussion with her.

We were also told that Caitlin is once again in a “wait and see” type situation. Dr. Moir from surgery has told us that “he will follow along with oncology as things develop”. He has told us that there may be future problems that may have to be corrected surgically. We were forewarned that Caitlin may need several weeks of physical therapy to strengthen her abdominal muscles, that she may require heat treatments to the area, and that she may also need RADIATION (yes, this awful word was actually mentioned!!!!) treatments to her belly to further deaden nerves. We are praying things do not come to this.

After the injection, Caitlin did much better. She had two additional doses of Morphine due to pain --- believed to be ‘incisional’ pain. Caitlin also was given her monthly IVIG infusion while hospitalized; she again reacted with severe back pain which did subside after the infusion was complete. Her pending appointments next week at the Mayo were also rescheduled with the hopes that we may have some time at home (we have been up at the Mayo almost every week!). Should no problem arise, Caitlin is to have x-rays and blood work done here at our local hospital in two weeks. She will be scheduled at the Mayo in four weeks. Of course all this is tentative upon Caitlin’s condition and with what happens from here. Caitlin was discharged from the hospital yesterday. We actually ran from the hospital --- and this was a much different picture than her arrival!

From here, we will hope and pray that the simple fix to Caitlin’s recent problem will continue. We will hope and pray that she continues down the road of recovery. We will hope and pray that the problems, infections, and fevers that continue to plague Caitlin one day will stop and that she will once again have that normal life that we all so want for her. I told Caitlin that, “we will never know which one of your visits to the hotel St. Mary’s will be your last --- and that it could be this one!” We’ll keep our fingers crossed for this!

My apologies to our friends at the Ronald McDonald house for not stopping by to visit! But when we were given the ‘A-Ok’ to leave, we only wanted to get the “heck out of Dodge“! As always, thank you for checking up on Caitlin today. Your prayers, love, and support continue to get us through.

Friday, September 3, 2004 4:21 PM CDT

Caitlin is back in the hospital, once again having extreme abdominal pains. She has been receiving Morphine every two hours since her arrival here last evening. She has had an abdominal CT scan, and NO TUMORS were found! It also appears that there is no blockage! I will update again when I can. Unfortunately, the hospital library is closed for the next several days!

Wednesday, September 1, 2004 7:13 PM CDT

There is a wonderful program available for children with cancer that are returning to school called the ‘Trish Green Back to School Program’. This program is put on by members of the treating facility and offers resources that help integrate children with cancer back into the school setting following cancer treatment. Included in the presentation (often times held as an assembly prior to the childs’ return) are videos, printed materials that explain to classmates and teachers how children with cancer feel, why they may look different, what type of treatment they’ve undergone, and any special needs they may have upon their return. Unfortunately, because of the distance between our home and the Mayo Clinic Caitlin has not qualified for this particular program.

After both of her cancers, Caitlin has had to return to school on her very own following treatment. The challenge, to say the very least, has been daunting. Upon her return to school 3 years ago, Caitlin’s classmates were frightened (I am not blaming them --- these are children we are talking about and they knew no better). I remember Caitlin telling us stories of friends that refused to sit with her at lunch for fear that her cancer germs would be spread somehow through the food that they ate. I also remember the story Caitlin told of one friend physically stopping another friend from touching Caitlin --- saying “Ooooh, don‘t touch her, she has CANCER!” And although the children in Caitlin’s new school have now grown into young adults, it seems that the unknown and unexplained fear is still ever present --- along with the desire to lash out at those who are different.

While we had hoped and prayed that Caitlin’s return to school would be a wondrous, magical time for her the experience has been anything but. Caitlin had initially seemed upbeat about school, but when talking about her first day she broke down and cried. She reported horror stories of kids making fun of her --- and some so rudely looking her right in the eye and saying “Ooooh, look at how small she is! She must be in the wrong school!” There have been other, similar occurrences. Caitlin also told me that she had to sit all by herself in the cafeteria at lunch time. I am sorry to say that Caitlin cried for her old, beloved Adams School. I cannot tell you how mine and Dan’s heart broke for her. At this point, we cannot bear for this child to endure any more pain.

Surely, we are not the only parents going through similar challenges. The school years can be so tough and kids at times can be so mean --- especially to another child that is different, for whatever that difference may be. We have told her to give it some time, that all will be well, and that she will shine through and will win all over at her new school. Caitlin has such a warm personality --- and she is so funny! We have tried to kiss away her tears, chase away her fears, and have told her that we know she will be fine (and we'll keep our fingers crossed that this happens)! Thankfully, Caitlin continues to have a wonderful circle of friends here in our neighborhood!!!

I am extremely grateful for the efforts of my nephew Steven. Although younger, he is now ahead of Caitlin by one school year; he also attends the same school as she. Every morning he has escorted Caitlin to school, and every afternoon he has escorted her home. He has also shown Caitlin where all her classes are! Caitlin has said that this time with her cousin Stevie is the very best part of her entire school day!

Caitlin has now met one or two new friends, and this makes a world of difference! She has told one new friend about her cancer, her g-tube, and the fact that she hasn‘t really eaten in about a year (I was surprised she would talk about this)! This friend also apparently later witnessed some ’teasing’ directed at Caitlin and asked why she was not defending herself? Caitlin answered that “There’s nothing I can do”. This young girl then asked, “Do you have teeth?” and when Caitlin answered “Yes” this new friend said “So, bite them!” While I of course had to explain to Caitlin that biting would certainly not be acceptable behavior, secretly I have applauded this young girl for her quick ability to make my child smile… and for getting her past a very bad moment.

Sunday, August 29, 2004 7:55 PM CDT

Tonight I am very emotional. Caitlin is to begin school tomorrow morning --- after a long years’ absence. She begins anew with all the hope, excitement, and anticipation that I can remember from my own school years so very, long ago. Other than a bit of disappointment at the close of a short summer, Caitlin shows no fear and certainly no remorse for the decision she made in passing on with her grade to Williams Intermediate. She is extremely excited for tomorrow --- and to her nothing is out of the ordinary! I am, to say the very least, proud of my daughter. And although Dan has not admitted to anything, I know he is every bit as introspective as I am this evening.

With all that our young daughter has dealt with throughout her life, she has learned and is now a very, wise old soul. She certainly surpasses her parents (by far) with the very special knowledge and appreciation of life that she holds! We still continue to take our clues from her, and do try to live as she does --- with absolute love and excitement at each and every day! I say this in all honesty that Caitlin carries not a one worry in her heart!

This is very out of the ordinary for me, but tonight I would like to share a poem with you that I recently happened across:

"When you get it" ~~~ Beginning or End?

~~~ by Leslie Droll

You have cancer they've told you
Eyes fill with tears
A day to remember
Can't control the fear

You cry for the first day
But, then you must pledge
To determine the meaning
New Beginning? or End?

Choose New Beginning!
Life's "second chance"
Muster your courage
With no backward glance

God, family, vacation ~
Your new lease on life
Forgetting the everyday
Struggles and strife

Cut, burn, or poison?
Must you pursue treatment?
Not glamorous choices
But, life's bittersweet-ness

A vow of survival
A mission plan set
Surgery, radiation, or chemo?
How bad can it get?

You give up some flesh
Take poison ~ how bold
Irradiate your skin to 100 years old

Some go bald in the process
And needles abound
It's hard to believe
That you're not losing ground

Then, there are the people
You've met on the way
Be thankful for them
Each and every day

Not due to the illness
But the lessons it brought
Trade in this journey?
I would guess not

Without this experience
How would you know
what courage you have
Or how far you could go?

To get one more chance
At the legacy you'd leave...
You couldn't imagine
What God had up His sleeve!

For cancer has taught me
To give God His due
And pass on this message
From me to you

Believe in the miracles
While working to come back
God ~ and the Angels
Will keep you on track!

~~~~~~~~~~~~~~~~~~~~~~~~

And I quote from the above author’s book --- "When You Get It" is a paradox. When you get "it", you begin to get it. Life takes on new meaning, respect, and responsibility.

With every fiber of my being, I say here and now that I know our daughter ‘gets it’. I can only hope and pray that someday we do too.

With love,

Janine

Saturday, August 28, 2004 9:51 AM CDT

The Mayo doctors confirmed what Dr. Huettman told us several days ago: Caitlin does in fact have another case of pneumonia --- this one caused by the nasty bacteria Streptococcus. It apparently began from her cold and this strep bacteria quickly settled into her lungs --- causing excess fluid and the problem Caitlin recently had with oxygen levels; this, we are told, is common in patients with weakened immune systems. Although the pneumonia vaccine helps most people avoid this type of pneumonia and Caitlin has had the vaccine many times in the past, due to transplant and treatment she presently has no protection from common infections and disease. Dr. Arndt told us that Caitlin’s culture from several days ago showed “heavy Streptococcal growth” --- and I was surprised to hear that they had these results so quickly; sometimes cultures take up to 2 weeks to grow! Our local hospital Genesis West faxed results to Mayo almost immediately after the culture was taken! Although this type of pneumonia is a potentially life-threatening infection, Caitlin has in fact thankfully responded well to her first few days on the antibiotic Levaquin. Dr. Arndt was pleased with how well Caitlin looked and was then feeling, even given the fact that her lungs sounded horrible! At that point Caitlin had been fever-free for 24 hours --- and I continue to be amazed at how quickly she bounces back from whatever curve ball is thrown her! Other tests were ordered and accomplished while at the Mayo (the worst being an Induced Sputum Test), and we are now awaiting additional results.

All in all, it was a wonderful visit. Dr. Arndt was ultimately in charge of the appointment, but Caitlin also had to visit with Dr. Rodriquez, Dr. Khan, and Dr. Matsumoto --- all cherished friends, at this point. Quite a bit of time was spent just chatting! All of the doctors had heard about the contest Caitlin won at Camp Jornada and all asked about her “winning technique“! I was surprised to find out that Caitlin had won the ’Watermelon Seed Spitting Contest' --- she hadn’t even told us! Evidently, Dr. Anderson had announced during one of the teams’ meetings that Caitlin was the new champ --- and since she is one of only a few of their patients with chronic lung disease they were amazed and thrilled at her strength! And apparently all the doctors had a laugh on me and themselves --- because I had not taken Caitlin’s temperature the evening of her high fever --- because they had previously advised me not to take her temp any more! I have now received implicit instructions on when to take Caitlin’s temperature and when not to. Additionally, we did visit St. Mary’s and chatted with favorite nurses --- and of course Stacie!

Because Caitlin has responded to antibiotics, we were allowed to come home after only a 2-day stay in Rochester. We safely arrived home last evening after a long drive through some pretty severe Iowa storms! If Caitlin remains well and there is no change, we are only to return to the Mayo for her scheduled appointments the second week of September. Yeah! And we have it in writing and I quote … “Caitlin’s overall health is currently very good and she may safely enroll in school for the coming academic year”. Dr. Arndt said that Caitlin may begin school as planned on Monday! She has also concurred with the school that Physical Education class should be skipped --- at least for the next 6 months. The team apparently will readdress the situation in the Spring. It was also decided that when Caitlin’s course of Levaquin is complete, she will be put on Amoxycillin as an added protection against these recurrent lung infections.

Caitlin is quickly approaching the 6-month anniversary of her stem cell transplant. We have been told that at this point Caitlin should begin to get stronger and that her immune system should begin to recover. Apparently Caitlin is right on track! I have saved the best news for last and am so happy to report that CAITLIN HAS DEFINITELY GROWN ¾ OF AN INCH!!! After maintaining a height of a mere 50 inches for 4 long years, Caitlin is now proudly standing 50 ¾ inches tall! Her height was checked several times while at clinic --- and even Dr. Arndt measured Caitlin herself! All just had to be sure that it was true! And believe it or not, this growth occurred just within the past 2 weeks since Caitlin was last seen at the Mayo (there just had to have been something in the air at Camp Jornada)!!! With this good news and from here, we feel that very good things are going to start happening with Caitlin!

Thank you all for your continued thoughts and prayers --- and for the many messages sent to our guest-book! It means the world to us and our child! Your prayers continue to keep Caitlin strong and out of harm‘s way! Thank you!

Wednesday, August 25, 2004 7:37 PM CDT

When Caitlin came back from camp, she had the beginnings of a cold. She also was very tired and had lost weight. I attributed this to the fact that she had constantly been on the go! But as the days passed and Caitlin seemed to get caught up on her sleep and her feeds, she still did not seem to have much energy. Her cough and vomiting also became more frequent. I did not worry too much until late last night when Caitlin’s cough became productive.

Very early this morning, Caitlin woke me up and she was crying. She said she was burning up and did not feel good. Although I did not take her temperature at the time, I knew she did in fact have a fever because even her legs were hot to the touch. I gave her Tylenol and within no time the fever was gone. This morning she seemed to be feeling better but I, of course, had to report what happened to her Mayo team. Although initially it was thought we should return immediately, Dr. Rodriquez finally relented and we were instructed to see our local physician immediately; later Caitlin was seen by Dr. Huettman. Upon exam, Dr. Huettman reported that Caitlin’s lungs sounded really horrible --- he even said they were the worst he‘s ever heard them. A chest x-ray, peripheral blood culture, CBC with differential, and a sputum test were ordered; these were done at our local hospital Genesis West. The blood draws were very difficult for Caitlin; once again her veins were just not cooperating. Caitlin’s oxygen levels were also checked and while the results were normal when Caitlin was sitting down with inactivity, during the time she walked the hallway her saturation level went down to 80 (this is very bad). It was explained that oxygen is not getting to Caitlin’s lungs during a period of exercise. Caitlin also weighed in at 49 pounds.

After the tests at Genesis, we once again reported to Dr. Huettman. Caitlin finally admitted to him that she is having trouble breathing and that she can’t hear out of one ear. She also told him she’s been having headaches. This was all news to me! Dr. Huettman then told us he believes Caitlin has pneumonia once again, and that she has definite redness in one ear (another ear infection?). He called and reported all findings to Dr. Rodriquez at the Mayo. After a lengthy discussion, it was decided that Caitlin should be put back on Levaquin immediately (an anti-biotic used to treat respiratory tract infections). And although we had hoped to take care of this problem here locally and Dr. Huettman was more than willing to provide the care, Dr. Rodriquez wants to personally see Caitlin. We are to return to Rochester tomorrow.

In my heart, I knew another Mayo visit was inevitable. Off and on (as time permitted) I have packed and readied for our trip all day. As we were once told by one of Caitlin‘s docs, “We are compulsive about the care of our transplant patients”; this continues to be just fine with me. And true to form with our 'Couppee luck', Caitlin once again had a fever upon on return home after spending the afternoon at the hospital and the doctors' office! While I worry about these lung infections that Caitlin continually seems to get and the fevers that come and go, we are hoping that with antibiotics Caitlin will once again be well. Dr. Rodriquez has not said if Caitlin will be hospitalized --- we will find this out at clinic. But I am certain that Caitlin will have another CT scan to check on the status of those nodules in her chest; a simple chest x-ray really does not reveal much information.

Caitlin is supposed to begin school this coming Monday. We hope and pray that she will start the school year with all the other students just as planned.

And to let you all know, Stacie (Caitlin’s counselor, nurse, and co-director of Camp Jornada) just now called. She said that she really needed to hear one of Caitlin’s laughs --- and she was disappointed to hear that Caitlin was sleeping! Stacie also said that Caitlin and her laugh were a “big hit at camp”! I did promise that Caitlin and I would stop by to visit Stacie at St. Mary’s this week and that we would certainly let her know if Caitlin was hospitalized so Stacie could visit too! It was wonderful to talk with her --- Stacie is just such an awesome lady!!!

Friday, August 20, 2004 10:04 PM CDT

Yesterday was registration day at Caitlin’s new school Williams Intermediate. Needless to say I can clearly see that this change of school will not only be an adjustment for Caitlin, it will be for me as well. I did not even see one person or child I knew there! I was so amazed at the size of the young adults that attend this school (I don’t believe I can call these kids “children” any longer)! I instantly began worrying if any of these young adults would laugh at Caitlin and her very petite size. When I picked up Caitlin’s school schedule, it appeared that she would be taking about 12 different classes --- and the room numbers changed from 603, to 125, then to 303, etc.! Thoughts raced through my mind of all the walking and carrying of books Caitlin would have to do in order to get to all these different destinations; in my heart, I knew that a schedule such as this was something Caitlin could not easily accomplish. I instantly started sweating.

I then stopped by the table with school spirit items for sale because I had wanted to buy Caitlin a t-shirt with her new schools’ name and logo. The woman in charge of the table asked me, “What size are you looking for?” and I answered that “I am looking for a small“. She replied, “The only thing we have is an adult small”. When I unfolded the shirt I knew it would drag on the ground if Caitlin were to wear it, so I asked if a youth size could be ordered. The woman told me, “No, we only carry adult sizes”. She then asked me, “What size child is this we’re talking about that’s coming to this school?” and I answered “She weighs 50 pounds”. For some reason I don’t think this woman believed me --- and obviously she didn’t understand other situations --- because she went on to say “I have a 4-year old daughter and she already weighs 46 pounds”! Of all the things I could have said to this so and so right then and there and really wanted to, I stopped and reminded myself that ours is the unique situation not hers; of course this woman would not be thinking of a ‘sick child’. I told the woman I would wait, thanked her, and walked away. At this point (in addition to my sweating) my head was now pounding and I was on the verge of tears.

While I seriously entertained thoughts of bolting through the front doors, a friendly face suddenly appeared amongst the crowd --- “Hi, are you Caitlin’s Mom?” and she extended her hand. She said “I’m your daughter’s guidance counselor and I’m sure you’re overwhelmed with Caitlin’s schedule. Step into my office and we’ll make some changes”. Truly, this whole thing was saved in just the knick of time! And I was thrilled to hear that Caitlin actually has a guidance counselor now!

To make a long story short (or as short as I can make it), we discussed Caitlin’s condition, risks, and worries that Dan and I have; Stephanie addressed all issues with ease. Caitlin’s classes were changed to reflect coverage through her Individualized Education Plan (IEP), and other classes were cut out entirely. I was asked if Caitlin would be taking Physical Education and I answered that Caitlin could, but that she should be excused from any activity that she did not feel up to doing. I was then told that 75 children participate in one gym class and that a lot of activities go on at the same time with balls thrown this way and that, etc. Given the fact that Caitlin still has tubes and knowing of her delicate condition the Williams‘ staff was concerned; I was told that gym class might be a danger to her --- and from the sounds of it, it certainly seemed that it could be! I was instructed to speak with Caitlin’s medical team about it, and asked that her doctors write a note stating Caitlin should be excused from this class for the entire year. Instead of gym, Caitlin will be taking an Art class --- which I know she’ll enjoy more! Stephanie then told me the school has an elevator which Caitlin will be allowed to use. A teacher will walk her to the elevator a few minutes before the end of class so she can easily make it to her next class on time. Since Caitlin will be in the halls during actual class time, she will avoid the mad dash of students in the halls. I was also told to bring Caitlin to the school next week, so she can have her own private tour and feel a bit more comfortable. Although I’m sure Caitlin will not want to do this (she really doesn’t like special treatment), I was thrilled that this was offered. When I mentioned that Caitlin will be taken out of school during flu season and with any infectious outbreak, Stephanie never batted an eye; she assured me that Caitlin’s schooling would be taken care of one way or another. All in all, I left very happy with the knowledge that Caitlin once again will be in good hands.

Late last night Caitlin called me, once again, from Camp Jornada. It was 10:30 at night and this child was pumped! She talked non-stop for 30 minutes about the exciting and fun things they have done at camp. She also talked of all the really cool friends she has made while there. Thankfully, she also said that she really has missed us; thank goodness --- for this week without her has truly been hard on us! We are just not the same without her!

Dan and his Mom left early this morning to pick up Caitlin; I stayed behind to work and was so sorry to miss this event in our daughters‘ life. The camp hosted a picnic for the families, had a slide show of the children and activities enjoyed throughout the week, and held closing ceremonies. From what I have heard, it was absolutely wonderful! And they have tonight safely arrived home! Although she is tired, Caitlin looks very well. While away she never felt the need for a nap nor took any Benedryl for nausea. She had one brief fever, which never returned after a dose of Tylenol. She has talked non-stop about her week, the really cool Jell-O War the kids waged, and she sang us camp songs learned, etc. She has had loads of fun and a wonderful week! She also told us about something called the ‘Anger Wall’ and when we asked what that was she explained, “We got to write down what we hated about cancer and then we got to throw eggs at it. The wall was full of egg yolks!” When we asked what she hated about cancer and what she had written, Caitlin in all honesty said “I can’t remember!” Obviously, this Anger Wall works! Caitlin has also said that tomorrow morning she will be “sleeping in”. She told us that she will not miss the 7:00 AM morning wake-up ritual of “RISE AND SHINE! IT’S ANOTHER BEAUTIFUL DAY AT CAMP JORNADA!!!”

Caitlin and all the other children were given many souvenirs from Camp Jornada including backpack, t-shirt, visor, etc. But more importantly they were given many wonderful memories that will last a lifetime --- and they have cherished friends that Caitlin says she already misses. Caitlin has told us that she wants to go to this camp every year! Thanks to all our wonderful friends from the Mayo who make this camp possible --- and who ensure that all the children have such a fabulous time!

Monday, August 16, 2004 6:42 PM CDT

There has been tremendous excitement in the air these past few weeks as the time for Camp Jornada quickly approached. Each day Caitlin would count the days until camp --- and each day she would check just to make sure she had her count correct! Finally Sunday arrived and Caitlin was the very first one dressed in our house that morning; she also was the first one seated and belted in our vehicle! She smiled the entire drive up, and by the time we reached Minnesota that grin could not be wiped from her face! She literally bolted out of our truck when we finally pulled into the camp‘s parking lot!

We saw many old and dear friends, and of course many beloved children; there were hugs all around! Everyone was so happy --- and I think this was the most noticeable and incredible thing of all; we’ve seen many of these children so sick (including our own) and we have also seen many a worried parent. But this day was totally unlike any other that we have shared with these wonderful people that are now a part of our lives. It was great! Dr. Anderson was of course there and after many years of seeing him in suits and ties, we were thrilled to see him that day in jeans and sandals (I have secretly asked Caitlin to take lots of pictures of Dr. Anderson with his ‘hair down’)! As I’ve also said, many of Caitlin’s favorite nurses were there as well and one of the very nice ladies from ChildLife. I will not be worrying this week if Caitlin is alright --- I know she’ll be!

Caitlin was assigned to the cabin “Sunshine”, a darling little place that actually has two floors. The first floor is for the cabin counselor and nurse (Stacey!) along with two co-counselors, and the second floor has beds for four children --- I certainly noticed that there is no way these kids can sneak out at night - unless of course Stacey wants to sneak out too! Caitlin quickly settled in and made herself at home; she also easily acquainted herself with two young ladies that she had never before met. I was so happy to later hear that the fourth person in that cabin was Jessie --- a friend that Caitlin went through treatment with for the better parts of 2003 & 2004. Dan and I said our goodbyes with very happy hearts.

It was a long day for us --- 10 hours in a vehicle! But this was so important we would have driven to the ends of the earth to get our kid to Camp Jornada! We know that Caitlin is now on a wonderful adventure, she will make friends for life, and she will also have the time of her life!

P.S. Just when I realized how very quiet and empty this house was, Caitlin called me from camp (thanks, Stacey, for letting her use your cell-phone!). She is so excited and having so much fun! Dr. Anderson’s ho-down last night was a big hit and they all loved the dancing, squirting with water guns, and everything! Today it rained so the kids bowled --- and Caitlin told me she won a game! She loves her cabin-mates, and she told me that she and Jessie keep teasing each other! She also was able to spend some time with her friend Megan last night! She then told me she’s been eating and loves the camp cookies!!! Things couldn’t be better!!!

Thursday, August 12, 2004 7:11 PM CDT

For all of you that have read our journal day to day, I’m sure you will remember the feelings we had long ago in trying to formulate a letter to the donor of Caitlin’s stem cells. Every time we would start a letter, Dan and I would break down in tears with the many emotions that overcame us at the mere thought of this wonderful man and the chance of life that he was so generously giving our daughter. It was additionally an extremely hard time for us, for Caitlin was in the PICU’s Transplant Center and was so very sick from treatment. But we pressed on with our attempts --- we certainly had to thank this man for all that he had done!

Eventually we did complete a letter and after several drafts, the three of us finally agreed that the note was fit to be sent. I cannot exactly remember what was said but the letter spoke of our gratitude for the donor and what he had done, our love for our child and the possibility and hope of cure with transplant, Caitlin’s attitude towards cancer and her aspirations for the future, and that the donor’s life and ours would forever be entwined and that he would always be in our hearts and now in Caitlin’s body and soul. Thinking back it probably was a silly letter, but at the time we did the very best we could. Because we were not allowed to share confidential information about ourselves, we all lovingly signed the letter - Mom, Dad, and me.

We gave the letter to Dr. Anderson along with the two small art projects that Caitlin had recently made (when her hands and body shook uncontrollably and she was so violently sick). Dr. Anderson in turn passed this on to the National Bone Marrow Registry who would then forward it to Caitlin’s donor after X'ing out information we were not allowed to share. This was done in March. Since that time, we have heard stories of other transplant recipients with donors that were from other countries. I have learned that some countries (the Netherlands, for one) do not allow correspondence between donor and recipient --- not even after the one year waiting period. Many European countries have these type confidentiality laws; however, the National Donor Marrow Registry does release information of gender, age, and condition. Additionally, the Registry sends an update to the donor at the 100th day after transplant --- and relays the present condition of the recipient. Since we had the impression that Caitlin’s donor was from another country we wondered if he truly ever got our letter, and we worried that we would never be able to properly thank this man.

But be still our hearts! Tuesday evening, Michelle from the Mayo Foundation called. She told me that “We’ve received a package for Caitlin here at the clinic, and I am calling to verify your address”. I gave her our address and when I realized who the package could possibly be from I quickly asked “Is it from her donor”? Michelle answered “Yes! I will FedEx this package to Caitlin tomorrow and she’ll be getting it on Thursday”! I called for Caitlin and when I told her what had happened, she immediately jumped into my arms and hugged me as tightly as she could. She kept saying over and over “I can’t believe it Mommy! We’ve heard from my donor”! We shared a good cry, and I was so happy to see that Caitlin was just as emotional as I was --- and very anxious to hear from him!!! When Dan heard the news, he was just as emotional as his girls had been.

Let me first say that Caitlin would not have cared if her donor had sent a present --- a postcard would have been more than perfect! But today Caitlin’s package arrived, and it was oh so much more than a postcard and oh so much more than perfect! Inside the package, Caitlin found an adorable stuffed animal --- a dog --- and of course these are her favorite! There also was a letter and I’ll repeat his words exactly as written:

Hello dear god-child,

Finally the news that I was desperately waiting and hoping for arrived namely that you are back at home with your family and that you are doing better.

I did think about you, and the battle you and your parents have to fight against this terrible disease which seems to be so unbeatable, very often. You took the challenge and fought. What I did is not even to mention. You and your parents - you are the real heroes in this “story”.

My family and I were and are with you in our thoughts and we pray that everything will turn out just fine.

I do wish you and your parents all the best, strength and most of all good health for your “new” future.

Your “Blood-brother” from XXXXXXXXXXXX

P.S. Thank you very much for the present and thank your parents for the letter. It did touch Me deeply. In our hearts and thought we are with you!

Mama, son, daughter, and me

Words truly cannot convey the emotions that we all have been feeling today in hearing from our very own special hero. But if I had to try I would say we have been emotional, tearful, appreciative, elated, humbled, and awed.

Monday, August 9, 2004 7:59 PM CDT

We have gotten very good news. Caitlin’s CT scan results show that the nodules in her chest have improved --- and that the many nodules present have now shrunk to the size of peas! Dr. Rodriquez is very happy with progress thus far and now feels that the recent trouble has in fact been due to Shingles in Caitlin’s lungs! We gladly take these pea-sized nodules and are extremely grateful they are not something more ominous!!! Since Caitlin has had two outbreaks with the Varicella virus since June, she will continue taking Valtrex up until the one year anniversary of her stem cell transplant. Although this medication will cause higher liver enzymes, we are happy for Caitlin to have this added protection.

Caitlin weighed in today at 50 lbs and as always she stands 50 inches tall (that quarter of an inch reported a few months back has been lost; the nurse just must have made a mistake that day!). While this lack of growing issue is a concern, we will take Caitlin in any manner, shape, or size! Dr. Rodriquez was also very happy to hear that Caitlin now consistently eats breakfast. But she also feels that we should continue to wean Caitlin off these mechanical feeds --- in the hopes that Caitlin will feel more like eating solid foods. Caitlin’s lungs also continue to sound crappy, but Dr. Rodriquez apparently said “This is just Caitlin”! At next months’ appointments we are once again to visit with Dietary and Pulmonology in addition to the other usual visits. Caitlin also once again has Thrush, so she'll have to be on Diflucan for another month. Dr. Rodriquez also did not seem concerned with Caitlin’s recent trouble with back and feet pain, so we will try not to worry about these as well. Dr. Rodriquez also reported that Caitlin continues to be severely Lymphopenic, but said that we will see some improvement with her immune system at one year post-transplant; apparently, this is normal for where Caitlin is after transplant. Caitlin was also given the A-OK for Camp Jornada and for full-time school! So all in all, Dr. Rodriquez felt Caitlin was doing very well at this particular time! We will most definitely take this news!

Bless my husband’s heart, he really did well during this visit. But he has also told me how emotional and hard it was; not only for the concern and relief of the report on our daughter, but for the worry of other beloved children up there as well. He saw several children that we know and are presently going through treatment and said that it was “So hard seeing kids be sick like this“. Caitlin told me confidentially that “Daddy cried when we got back to his truck”. And Dan has told me that “I don’t know how you did it up there all those months”; I told him “I don’t know how you did it at home for all of those months”. It seems Dan and I have a different appreciation and respect for each other… for what we have both been through over the past year… and of course for what our precious daughter has accomplished…

We are also appreciative of Caitlin's doctors for scheduling her IVIG infusion on Sunday. This worked out really well and Dan missed one less day of work! And with the success of this visit, Dan and I will now begin alternating Mayo trips --- hopefully this will be a smaller burden on our employers! So I will be taking Caitlin up next time!

Sunday, August 8, 2004 7:29 PM CDT

There is never an easy time for anyone who has cancer, and there certainly are no easy times for parents of a cancer patient. Scan time is particularly worrisome --- for we find out if anything has developed since the last scan, and we get the yeah or nay to go on with our seemingly normal lives. Caitlin has had many PET, Gallium, and CT scans during the past four years and we have long ago learned that ‘scan time’ never gets easier. In fact, it only gets worse --- especially since our child has now fought this cancer demon twice. Scan time is upon us once again.

Caitlin and Dan are in Rochester right now. She received her monthly infusion of IVIG today at St. Mary’s Hospital and I am now anxiously awaiting their phone call to see what kind of reaction she had today. Her reactions to this product have gotten progressively worse these past six months. Tomorrow Caitlin will have a full body CT, followed by clinic appointments. We will then know what is happening in her chest and with those nodules. Although her cough has seemed a bit improved, it is still however present. We hope and pray that whatever was seen in her chest several weeks ago has now disappeared.

Dan wanted very much to take Caitlin for her appointments this time. He told me that “You have done so much, it’s time for me to step up”. Although I disagree with his statement of wanting to ’step up’ (he has always done this!!!) I did let him take her and I have stayed behind and will work tomorrow. This is the very first time I have not been with Caitlin for anything! I do, however, regret the decision for me to stay home --- this is so hard and I feel so lost! Since they left I have been besides myself with worry and I also seriously considered just getting into my vehicle and driving up there too! I do not know how Dan did it all those long months; not knowing what was going on and anxiously awaiting a phone call. Being at home and away from Caitlin is the hardest thing to do! And although he would disagree, Dan certainly stepped up a very long time ago!

Although this current threat has been hanging over our heads for the past few weeks, we have gone forward with tentative plans for the future. Caitlin and I have done some serious clothes shopping this week in anticipation of her start at Williams Intermediate School --- she still insists on giving this her very best effort! Although we felt beginning school with half days would perhaps be better for her, we have ultimately let Caitlin make the decision herself. And she decided she will be going to school full-time! We have also begun getting ready for Camp Jornada, which begins just one week from today! This is all that Caitlin has been talking about! Several friends that will be going to this camp have contacted Caitlin --- and this only adds to her excitement! We have heard that 80 children will be attending this year! Stacey (one of the camp directors) had generously offered to drive Caitlin home if we were unable to pick her up at the close of camp, but Dan now has accumulated 2 days of vacation time and he will be using that. We will both be bringing her to camp next Sunday.

I will post as soon as I hear some news. Thank you for all the continued prayers, thoughts, and well wishes.

Love, Janine

UPDATE: I have just now heard from Dan and Caitlin. The infusion today went fairly well, and of course Caitlin reacted with chills, shakes, severe back pain, and a low-grade fever. All is well now, however...

Thursday, July 29, 2004 7:26 PM CDT

Knock on wood!!! Things are going pretty smooth in our world this week! Caitlin has been feeling well since Monday, and she has been able to get in quite a bit of play time! There has been minimal complaints of nausea, no vomiting since last week, and from what I can tell no fevers either --- this is very good news! And with this good week, I have been able to calm down as well. Thank you, as always, for bearing with me.

While at clinic last week, Dr. Khan had instructed us not take Caitlin’s temperature unless she complained of not feeling well (quite a different story than what Dr. Arndt had told us!), so this week Caitlin has adamantly refused to let us take her temp! She has not yet realized that a simple kiss on her forehead just about accomplishes this very same thing and tells us what we need to know! Her cough has also improved, and we are once again hoping for an infection to have been her recent problem --- and that she is getting over the trouble.

While Caitlin is still not 100 percent after the transplant, she has certainly come a very long way. She continues to struggle with fatigue, but pushes for all the fun she can manage in one day --- I commend her spirit! Although Dan and I are still not sure about school this Fall (and it’s approaching so quickly!), Caitlin has said that she does in fact “Want to try”. Caitlin also is still 'on the pump' 15 hours per day for g-tube feeds. While she does try to eat, she is still up and down on this issue. She tells us that at times she just “Doesn’t feel like eating”. We try to accommodate her feeds (the most important thing in our world right now!) according to how she feels, but with my return to work it’s a bit difficult; Mom does, after all, need to sleep once in a while! We have just recently gotten a new pump from American HomePatient (we’ve 'blown out' two others already!), and this one actually does what it is supposed to do --- it really works while not plugged in to the wall! Caitlin can now go out to play while carrying her portable pump!

Caitlin has been invited to attend Camp Jornada this year; this camp is held at the Ironwood Christian Ranch August 15th through August 20th in Stewartville, MN. Camp Jornada is for children with cancer, siblings of pediatric cancer patients, and also for children of parents with cancer. It is run by our very own Dr. Anderson (head of Pediatric Oncology at Mayo) and several of our favorite nurses! At first I was concerned about allowing her to attend, but I was assured there was nothing to worry about --- she will, after all, be in the best of hands! Caitlin is so excited about this! She has said that “No one is going to make fun of me because of my hair or my size --- they are all going to be like me!” Honestly, how could we possibly have had the heart to tell her “No”? Caitlin also knows several other kids that will be going to camp, and she is excited to meet her new friend Megan (they’ve been e-mailing!)! She has picked out activities for the week which include swimming, horseback riding, fishing, and arts and crafts. Caitlin is also looking forward to Dr. Anderson’s ho-down --- all are to dress in their finest cowboy and cowgirl outfits! She will certainly be seeing Dr. Anderson in a coat of a different color!

So we have new prayers this week. We pray that Caitlin recovers from whatever has been going on, we pray for a good CT scan on August 9th, and we pray for good health for all that are to attend Camp Jornada!!!

Saturday, July 24, 2004 1:13 AM CDT

We had another scare this week. Caitlin again developed fever early Thursday morning and although she said she felt well, I of course was compelled to make that call to the ‘Pediatric Oncologist on call’ (Caitlin has been sick for so long, sometimes I don’t even believe she can remember what feeling good feels like). During that 5:00 AM phone conversation with Dr. Arndt, I was told it would be best that Caitlin be seen that day in Rochester (instead of waiting for Monday’s appointments). Out came those darn suitcases again --- and we had another mad dash of readying for yet another unscheduled trip! During the long drive, my mind just raced with thoughts… what does this fever mean … remembering how Dan and I fear unexplained fevers the most… and I kept trying to push the worry of Caitlin’s cancer returning from my mind, but it was very difficult. Caitlin complained the whole way about having to go back to the Mayo and how sick she is of this kind of life.

Thankfully, Dr. Arndt had arranged clinic visits instead of a visit to the Emergency Room. Caitlin had blood drawn and a chest x-ray taken. What a big girl --- to all that asked Caitlin reported all medicines she is presently taking, what she is allergic to, and what reactions she has, etc.! In all our Mayo visits, this was the first that Caitlin was treated as she is the patient responsible for herself! We then met with Dr. Boyce from Infectious Disease who reported that although she had fever, Caitlin looked extremely well. He heard cracks and wheezes in her lungs, but didn’t feel anything was terribly worrisome. He also said that his view of the nodules in her chest “Could be from something she is recovering from, instead of something active”. He told us that Caitlin’s cultures are still pending, but that three different fungi are growing from one culture --- but that these could possibly be just normal flora. He also noted the presence of swollen lymph nodes now in Caitlin’s neck, and the ones previously felt under her arms. He seemed unconcerned about Caitlin’s present condition and reminded me that “Oncologists always will tell you the worse scenario”.

Our next visit was with Oncology, and Dr. Khan. Now this is one positive woman! She breezed into the room and exclaimed “Now Caitlin, I want to hear all about what you’ve been doing this summer!” After time spent chit-chatting, she finally reported that Caitlin’s chest x-ray was normal. When I mentioned that Caitlin’s last x-ray was normal too and the CT horrible, Dr. Khan just shook her head and offered no comment. She then told me not to worry about the ups and downs of Caitlin’s temperatures, and that we will wait to see the result of her CT scan in two weeks. Dr. Khan said that there was no reason to change the current plan in place for Caitlin. I felt like screaming “WHAT DOES THIS MEAN???” but did not. On exam, Dr. Khan reported that Caitlin’s lungs “Sound crappy, but that’s not really unusual”. Dr. Khan felt no reason to put Caitlin in the hospital, and told us to return home and enjoy the time. Sometimes I wish I could read these doctors’ minds…

During the long ride home Friday, I thought about the fact that we know less now than we did going up. And I realized that we are once again in that infuriating ‘hurry up and wait situation’. With all of our dealing with Oncologists, I will never understand how these now beloved doctors can do what they do day after day --- look into the eyes of a worried parent and tell them not to worry.

We made a special stop in Cedar Falls, IA on the way home. We visited the gravesite of an old friend of Caitlin’s that passed just one year ago from cancer --- Kaitlyn. Caitlin and Kaitlyn were in treatment together in the years 2000 and 2001. This Kaitlyn was only 11 years old --- and she was such a sweetie. We have thought of her so much, and were so saddened to hear of her passing. We found her resting place without any problem for hers has balloons, a small Christmas tree with decorations that Kaitlyn made, angels, pennies, and sparkling stars scattered around. We said prayers and although this may not be appropriate when talking of the passing of a small child, I was happy to see that my Caitlin cried. For so long it seems Caitlin has not shed a tear with the passing of a friend. But she cried yesterday, and even wrote a short note to her friend… saying how she missed her and loved her. Caitlin told me later how she wished Kaitlyn’s catheter had been taken out before she had been buried --- and I assured Caitlin that “There are no tubes or catheters in Heaven”.

Caitlin and I have had deep conversations as of late; not because we have been told she will die, but because Caitlin has wanted to talk of such things. As always, I take my clues from her. Out of the clear blue Caitlin said that “If I die, I want Andrew to have my heart --- it’s the right size!” (for those of you that do not know, Andrew is the young man that we met at the Ronald McDonald house who has been waiting for a heart for a very, long time). I do not know the rhyme or reason why this thought came to Caitlin at that particular time, I am only reporting that she obviously felt this very deeply in her heart. I also realize that she carries the worry of Andrew’s illness in her heart, for it has been quite some time since we have seen him (please don’t cry Deb). I did not mention the irrelevant fact that Caitlin’s heart would perhaps not be safe for transplant --- this is one of those ”too much information” type scenarios. Because we were talking along these lines, I asked Caitlin “If Mommy and Daddy were ever told you were going to die, would you want us to tell you?“ Caitlin asked “Would it make a difference?“ and then she answered her own question with the lighthearted answer “I don’t know, whatever you think”! God, I love this kid!

Try as I may to will the end of this journey, I fear that we have not seen the last of 'danger'...

Monday, July 19, 2004 5:14 PM CDT

The past few days have been a bit scary for us, to say the least. Upon our return home Caitlin initially did not do well. Her terrible cough continued and with a bad session vomiting followed. We kept our vigilant watch and took her temperature just about every hour on the hour; she wavered between 99.4° - 99.8°. With 100° considered a fever, we came very close to another midnight run back to the Mayo. On Sunday, however, she looked much better and her temperature was normal. She also seemed to have more energy! But the best was yet to come --- this morning she announced that she would like to try solid food instead of tube feedings (she has not entertained this thought for months)! Dan watched in amazement as she ate a bowl of cereal and then later had a good portion of soup! Be still our hearts!

At this point in our care of Caitlin, Dan and I are very nervous parents. When your child is “in danger” the fear is all consuming --- and Dan and I are no different; this feeling is not something that we will ever get used to. Her unexplained fevers of last week had us besides ourselves with fright (of course Dr. Arndt never minces words and this didn’t help either). But today we are feeling that it is highly possible and more likely that Caitlin has, in fact, just had an infection of some sort. It certainly seems like an infection --- because the antibiotics are doing the trick! We have also remembered back to the time when Caitlin had Chicken Pox and the fact that her lesions actually went down her esophagus. So to us it’s likely that these nodules in her lungs truly could just be caused by the Shingles! Why not? Now we are praying for Shingles and please --- don’t let that cancer come back!

I felt comfortable enough this afternoon with Caitlin’s condition that I have even allowed her to visit with her friend Emily --- she is just across the street, but I’m sure Caitlin needs this bit of freedom! It’s hard to never get a break and to never play! I have also, once again, unpacked our suitcases… and I even reported to work today to give it another good ole’ try! Caitlin is to return to the clinic July 26th for that chest x-ray, blood work, an Infectious Disease follow-up, and a visit with Oncology. She is also to return August 8th and 9th for another IVIG infusion, full body CT, and Oncology follow-up. Until then, we will be saying our prayers that these nodules are disappearing --- we’re keeping our fingers crossed too! Thank you for your prayers as well!

Thursday, July 15, 2004 9:02 PM CDT

Caitlin’s CT scan on Monday revealed many nodules in her lungs. It was also noted that she has swollen lymph nodes under her arms and thrush once again in her mouth. A bronchoscopy was done Tuesday, and the fluid that was taken from her lungs was sent for analysis. Initial stains for infection were negative (including Pneumonia); cultures, however, are still pending and may take up to 2 weeks for results. While in the hospital, Caitlin received several infusions of the anti-biotic Cephaphime. This did in fact help her to feel better, and after 48 hours without fever she was released from the hospital. We have just today returned home. Presently she has broad coverage for any fungal, viral, or bacterial infection that may be going on; she is taking Bactrim, Diflucan, Levaquin, and will continue on Valtrex for an additional 30 days. While hospitalized, Caitlin also received her IVIG infusion and again had terrible reactions to it --- chills, shakes, headache, and a horrific backache (I am beginning to hate these blood products that she so desperately needs.).

The conditions of her release are strict, and I have to admit being horrified at her early hospital dismissal. She is to be on a 24-hour watch, and should any change be noticed she must return to the Mayo. Dr. Arndt said, “If she so much as sneezes, get her back here immediately!” Dr. Henry from Infectious Disease said, “Although she is being released, her microbiology will be followed every day. Don’t be surprised if you get a call from me telling you to return to the Mayo for further treatment.” Dr. Wylam from Pulmonology seemed unconcerned, although he explained the importance of diagnosis in a transplant and immune-suppressed patient; infections can be life-threatening. Should no change be noted, Caitlin has follow-up appointments and another chest x-ray scheduled in 10 days. If this appointment goes well, she will return to the Mayo 2 weeks later for another CT scan. If the nodules seen in her lungs have shown no improvement, a biopsy will need to be taken. Dr. Arndt has explained that although it seems that the process now going on in Caitlin may just be an infection (and could even be Shingles in her lungs), it is also possible that her Lymphoma has returned. Cancer can only be verified through biopsy, and to get a lung biopsy Caitlin would be scheduled for thoracic surgery; her chest would have to be opened and her rib cage broken in order to get a biopsy from the lungs. While Dr. Arndt tells me that children are resilient and recover quickly from this type of surgery, she also reminds me “Not to worry” --- she has even teased me that “You obviously have taken Worry 101 in college and even seem to have taken Advanced Worry classes”. While I appreciate the humor, understand that although we have had many scares such as this since August of 1999 it is never easy. We cannot help but worry, and we are praying for those Shingles in her lungs --- for this is treatable! Please, let this just be an infection!

While in Rochester and under the watchful eye of her Mayo team, I could not help but feel relieved to be there. There is still so much involved in Caitlin’s care at this point, and I worry I may miss something in her healthcare. Caitlin and I this week have talked about the feelings we have that we just do not belong anywhere --- we do not belong in the hospital, yet we do not belong at home either. I wonder if we will ever feel comfortable with simple, day to day life.

Many thanks to all of you that have checked in on Caitlin today --- especially our dear friends from the RMDH! We think about you all --- especially dear to our hearts are Andrew, Chloe, Justin, Michelle, Baby Kate, Madison, Carl, Jordan, and Dan! And we have said many prayers and cried many tears this evening for the passing today of the beautiful, young girl Michaela --- from the horrible childhood cancer Neuroblastoma.

Monday, July 12, 2004 10:53 AM CDT

We are back in Rochester where Caitlin has been hospitalized. She has been having high fevers, a terrible cough, chills, sweats, and just generally not feeling well. She is pale and once again black circles appear under her eyes. When we reported to the Emergency Room yesterday, I was told Caitlin's heart rate was very high and her saturation level was low --- meaning some sort of respiratory distress. A chest x-ray was taken, but it appeared normal. She weighed in at 48 pounds.

Since admission, Caitlin's fevers come and go. Unfortunately, each time she spikes a fever cultures have to be drawn and she has to get poked. Whereas she has done well with this in the past, this time is difficult; her veins are not cooperating and blood is hard to draw. She cries that "I wish I still had my catheter!"

Today Caitlin is scheduled for a chest CT scan, and later she will be receiving an IVIG infusion. Dr. Arndt as of yet offers no explanation or opinion as to what may be going on. But I am hoping this is just a respiratory infection of some sort, and that with anti-biotics Caitlin will soon be feeling better.

Tuesday, July 6, 2004 7:38 PM CDT

We have been home for a few weeks now and it is wonderful. I cannot tell you how happy we are to be a family once again --- and to be back in our own schedule of life! With major unpacking finally completed, we are now feeling a bit more settled. We no longer are living out of suitcases!

Caitlin had been surprisingly discharged on that Friday of my last entry (June 18th). Because she was still infectious with Shingles and could easily infect other immune-suppressed or Oncology patients, she was unable to return to the Ronald McDonald house to properly say goodbye --- and she was quite upset about this! But as with other things that we have no control over, we just made do. In a mad dash I finished packing up our room, did final cleaning for the next family, attempted to say goodbye for the both of us, picked her up at the hospital, and we were on our way! Honestly, I believe I would have driven through the night if I had to in order to get us home!

She has done well here, although she certainly had not seen the last of her Shingles. She had yet another outbreak when her oral medication Valtrex changed from 1000 mg to 500 mg per day. She was seen by our family physician Dr. Huettman who felt the need to call the Mayo team (her care at this point certainly can be intimidating). Dr. Huettman was told that an immune-suppressed patient such as Caitlin can break out with Shingles for quite some time, so an additional seven days of full-dose Valtrex with ten days half-strength was ordered. If this did not work, we were to return to the Mayo immediately. Of course she had to be kept in the house in isolation so as not to infect anyone --- and this was really hard for her! But her lesions finally now seem to be healing and we have managed to escape yet another unscheduled Mayo visit. We also had a further scare of another ‘midnight run’ back to the Mayo when she needed lab work done here locally and the results showed extremely high liver enzymes once again. After several phone conversations with the Mayo team, it was decided that her liver enzymes were probably high due to medications --- and that she could just be seen at her next scheduled appointments of July 15th and 16th. It looks like we’ll actually get this month here at home!

I had truly hoped that our return home would bring back the old Caitlin in full swing, but it seems that this will just take a little bit longer. Caitlin still is fatigued, is plagued with nausea, and does occasionally vomit. What a long time her recovery is taking after treatment and transplant! Her skin also seems to be going through changes, and we continually have to put cream on to fight this terrible dryness that actually forms scales. I am sure this will be addressed at her next clinic visit. She weighed in at Dr. Huettman’s office at 51 pounds, which was a bit of a disappointment. We continue to struggle with g-tube feeds and a schedule that she can handle. Although she does attempt at real food, the bites are few and far between (we have even kept her ‘off the pole’ for 12 hours in a stretch just to see if she would get hungry). It had been mentioned that possibly her g-tube could be removed at the end of this summer, but Dan and I just do not see this happening. She is, however, off of more medications --- no more Busbar, Erythromycin, or Diflucan. The terrible medication Tacrolimus has finally now been tapered down to .2 ml twice daily, and this is the last week she will have to take it. Yeah!

I have finally sorted out Caitlin’s room (this chore was saved for me --- Caitlin wouldn’t allow anyone other than me to do it!). I have never had such a hefty project! All her toys had to be gone through --- and she has accumulated so very much! Old toys had to be discarded, new ones organized, and piles to be donated packed. In the end, her room finally looks very nice and she is happy; she truly likes a bit of tidiness amongst the chaos. She was also thrilled when we donated her old toys to her Aunt Sue’s shelter for women (and children) --- it gave her that wonderful feeling of truly having done something important and making a difference. It brought a tear to my eye as well…

I have also worked on and hopefully brought back to life a very special garden by the side of our home… a garden that used to be the garbage area … the garden that we worked on and planted several years ago in honor of Caitlin’s first fight with cancer. We have appropriately named it “Caitlin’s Garden” and it is very special to us --- an area brought back to life similar to Caitlin’s rebirth several times now. It may seem silly, but this garden must never die! It was the very first thing I worked on upon our return! Thankfully, our nice neighbor Don weeded it while we were gone!

We had a wonderful July 4th celebration and spent the weekend in Des Moines at Adventure Land! We actually got a hotel room just for fun! We had a ball, and Caitlin sure enjoyed all the rides and games. And as always, we fooled the age-guessers at the park and won lots of prizes! While watching Caitlin have so much fun, Dan and I had to pinch ourselves --- and we commented several times “Who would have thought we could be doing this?” God is good.

I have just today returned to my job with Personnel at the Rock Island Arsenal. While I had worried tremendously about this and was unsure about leaving Caitlin, I now see how good it will be for all of us to return to this sense of normalcy. Work is, after all, what parents do! Not only was I welcomed with open arms and lots of hugs, the wonderful bunch of friends I work with had decorated the office with streamers and posters and brought in all sorts of wonderful food to snack on throughout the day! The amount of love and support these fine people have shown throughout is overwhelming! I am so lucky! And I am so grateful that the wonderful temp that was hired to fill my position while I was gone is retraining me --- because I find that my brain has turned to mush!

And in a final note, Caitlin loved her trophy! She said over and over again “I’ve always wanted a trophy!”

Friday, June 18, 2004 9:52 AM CDT

Although we had feared the worst and having Shingles is never easy, Caitlin is now improving. It has been over 24 hours since her last new outbreak and it seems the Acyclovir infusions she's been receiving have done the trick! We are so relieved! And we know that this also means we'll be heading home soon!

The end of this journey quickly approaches. We will leave behind and say goodbye to the wonderful Ronald McDonald staff and to many beloved families. Although there has been much sadness here, there have also been many miracles. We will carry many children in our hearts and continue to pray for their own miracles. We will leave happy with our escape, but also know we will never view life in quite the same way again.

I have faithfully maintained this journal and while at times I felt I couldn't write another said thing, I am now glad for the written words. As intended, this journal has been a testament of Caitlin's courage --- and perhaps as an adult Caitlin may even read this and may want to look back on this period in her life that she now just wants to forget. Many of you have expressed gratitude for this journal, but it is I that am grateful to you. Your love, support, and prayers have made a lifetime of difference to our child and to us. I remember someone writing, "There are so many of us down here praying for Caitlin, God couldn't help but notice!" I know in my heart and soul that your well wishes and prayers have helped in the miracle of Caitlin's survival. Your supportive messages also have gotten us through many a dark day. With Caitlin's first cancer, no one understood nor did they realize what she had been through. This time, however, we know that you know --- and we are glad that you have been with us throughout it all. Thank you so very much!

We happily embark on this next phase of our life: Caitlin's total recovery, continued good health, and normal life once again as a family. Although there may be challenges ahead, we will take each day as it comes and remember to live each day to the fullest. We believe our child will continue to be one of the success stories of the Mayo Clinic and we will forever be indebted for the skills of Caitlin's physicians (or should I say magicians?). We hope and pray that this is the end of Caitlin's journey, and that I will have much less to write about. I am, just as you, along for the ride --- the story writes itself. But please, let's hope it is over!

In a final note, I have to tell you that all of her life Caitlin has wanted a trophy. Unfortunately her health has not allowed her to participate in any type sport. We know it is not the same thing as winning one, but upon her return home Caitlin will be given a beautiful, golden loving cup that sits atop a marble base. Because of her triumphs in many battles, the inscription reads:

TOUGHEST COMPETITOR
Caitlin E. Couppee
AWARDED FOR EXCELLENCE IN LIFE ACHIEVEMENTS

With much love and God bless,

Janine

Wednesday, June 16, 2004 10:27 AM CDT

Caitlin was so happy and felt so good on Monday. As promised, Dr. Moir fit her into the surgery schedule; in fact, she was his first case that morning. In addition to the removal of her long-term catheter, a bone marrow aspiration with biopsy was done; this was her final test. After her outpatient discharge we visited the pediatric floor where we said our goodbyes to many beloved nurses. From there, we only had one remaining appointment at the clinic the following day and we then would be heading home.

Unfortunately fate had a different plan for us. Nine hours after her catheter removal, Caitlin had a temporary IV put into her arm and she was admitted to the hospital. She has had a reactivation of Varicella Zoster (that blasted Chicken Pox virus) --- and has a full-blown case of Shingles! The reimurgence of this virus is due to the fact that she is immunosuppressed; this happens to about 20% of Bone Marrow/Stem Cell transplant patients.

We are told every patient is different and that there is no way to know how long Caitlin must remain in the hospital. But when Caitlin is done breaking out and the lesions are "crusted over", she will be released to our old Ronald McDonald room on oral anti-viral medications. We will then have to stay in Rochester until her doctors feel the virus is in check. In the meantime, she is receiving three IV infusions of Acyclovir daily. The possible side effects of Acyclovir are fever and nausea --- and Caitlin certainly is experiencing both; she is once again miserable. Dr. Anderson and Dr. Khan explained that Shingles usually appear in a band and that lesions are normally within one contained area; however, immunosuppressed patients generally don't have a normal case of Shingles and that their lesions may be widespread. Caitlin's lesions now appear on the small of her back, on her belly, and up her sides.

Dr. Anderson is such a calming presence and he tells us not to worry. But of all viruses that could have come back the Chicken Pox Virus was the one Dan and I feared the most. When Caitlin had the Chicken Pox five years ago she was very sick and nearly died from it. Her case was so unusual, doctors visited her just to see. She was 90% covered and 80% were infected. Her lesions even appeared in unusual places --- the bottom of her feet and down her throat; her muscles were also affected and she could not walk. She continued to break out after fourteen days, and Dan and I were told she would eventually need cosmetic surgery for removal and coverage of her many scars. I remember that Dan and I removed all mirrors from her hospital room and that we refused delivery of balloons sent for fear she might see her reflection. For lack of a better description, Caitlin looked as Linda Blair did in the movie 'The Exorcist'. Yes, this Chicken Pox virus scares us to death. But we trust in Dr. Anderson's words, "On a scale of 1 - 10, the seriousness of Shingles is only a 1 or a 2". And we must remember that Caitlin now has a new immune system in place!

I suppose it only par for the course that this Couppee family must remain stressed out and worried until the very end...

Sunday, June 13, 2004 11:15 AM CDT

This is finally Day 100 of Caitlin’s new life! With this milestone reached, Caitlin is “much less at risk”. The threat of acute Graph vs. Host disease has gone by, although it is still possible for her to develop chronic Graph vs. Host disease yet in the future. She will remain susceptible to infection or disease up to a year after transplant and until she is re-vaccinated with all normal childhood vaccinations. Although no promises are made, Dr. Khan anticipates no further problems from transplant. Keeping cancer at bay will forever remain in our prayers.

What lingers, however, are still effects of treatment from chemotherapy and radiation. Presently her skin is extremely dry and continues to flake and peel off. Her fingernails are also very soft and these peel off as well. There is also the occasional nausea, vomiting, and fatigue. With all the possibilities of what could have happened, we are certainly not complaining of this small stuff!

The rules of Caitlin’s release are much relaxed. She may now eat whatever she wishes, although buffet food and dishes that have been at room temperature are to be avoided. She may swim in chlorinated pools, although she is not allowed in lakes or ponds. Up until one year after transplant she is not to go into any woods, nor can she touch or dig in any type soil. Air filters in our home are to be changed monthly and windowsills need to be sterilized often. Should she develop fever at any time up until March 2005, she will have to be taken to the hospital.

Dr. Khan has also said that if Caitlin stays well throughout the summer, she may start school in the fall! It has also been decided that follow-up visits to the clinic need only be monthly, and that blood work be done in Davenport every other week and the results faxed to the team. Dr. Reed (Caitlin’s Immunologist) has decided that IVIG infusions need to continue for at least another six months.

Our last appointment on Friday was with the surgical nurse who schedules procedures. She reported that Caitlin could not be scheduled for catheter removal until this coming Friday --- you can imagine our disappointment! She then, however, called Dr. Moir and explained that we are awaiting this procedure before our return home --- and Dr. Moir said “I will fit Caitlin in on Monday no matter what”! Bless his big heart!

Wednesday, June 9, 2004 10:28 AM CDT

Caitlin had another good check-up on Monday. Dr. Khan was thrilled that Caitlin has done so well since hospital discharge and that she has recently reached goal with g-tube feeds! There were just a few small problems, however. Caitlin has, once again, developed thrush in her mouth; a few weeks of Diflucan will clear it up. Also, the IVIG infusion on Monday caused yet another reaction --- this time it came in the form of severe back pain. Thankfully, Dr. Khan said that this IVIG infusion will be one of Caitlin’s last! Tacrolimus continues to be tapered and Caitlin’s tremors are now hardly noticeable. She weighed in at 53 pounds.

While at the clinic, we saw many of Caitlin’s doctors --- Dr. Arndt, Dr. Wylam, Dr. Henry, and Dr. Anderson. They could not believe how wonderful Caitlin looked, and how well she is doing! Caitlin was her old self --- very happy and very chatty! She even did her impersonation of Donkey from Shrek 2 for them all!

We have come home again for a short visit, but will be returning to Rochester tomorrow. Caitlin has had a wonderful time with her friends, and I am surprised but delighted to see that she is full of energy! She has clinic appointments again on Friday, and one appointment is with Dietary --- to instruct me on how to decrease g-tube feeds as she begins to eat! She also has an appointment with the surgical team --- to schedule removal of her long-term catheter! This is the one and only time I believe we have looked forward to clinic visits!

Our room at the Ronald McDonald house has now been packed and emptied; what is left is only the bare necessities. It is hard for me to believe that we will be checking out next week, and going home. I never thought we would reach this point, nor at times did I think I‘d be bringing my little girl home. It truly is a miracle, and one that we will always be extremely thankful for.

Sunday, June 6, 2004 5:11 PM CDT

This has been the weekend of ‘National Cancer Survivors Day’; many events have been held across the country in honor of those surviving cancer. Though many lives have been touched by this dreaded disease, to me personally none deserve recognition more than my own daughter. She has, after all, survived two primary cancers --- and beaten all odds. We attended ‘A Celebration of Life’ function today here in Rochester. Its theme was to “honor the courage and perseverance of people touched by cancer". A great many people attended. There was a catered lunch, entertainment, and door prizes. Cancer survivors signed a very large banner, which was later held in front of the group photo. While all survivors were recognized, only a few from certain categories were awarded medals. The categories were the farthest distance traveled for treatment, the longest surviving (a woman who has survived cancer for 44 years!), the most recently diagnosed, and the youngest diagnosed. Since Caitlin was the only child in attendance, she won in this last category! Caitlin was called onto the stage and the medal was placed around her neck (it depicts someone running with outstretched arms, and says ‘National Cancer Survivors Day 2004 * A Celebration of Life”). She was asked “what is your secret of surviving cancer?” and Caitlin answered “playing lots of video games and trying not to be bored!” The crowd seemed to enjoy her answer, for there were laughs and cheers at her response! I was so happy that Caitlin has been recognized for such a big accomplishment! Throughout the day, we met and spoke with many other survivors. But most just wanted to hear of Caitlin’s story. As the event came to a close, each survivor was given a Dogwood tree to plant in their own yards. What an emotional but wonderful day! (Photos from this event will be posted at: www.cancer.org/hopelodge and the group photo and write up will also be in an upcoming issue of Coping Magazine)

In my hometown of Manchester, NH this weekend the American Cancer Society’s ‘Relay for Life’ was held to raise funds to help eliminate cancer. My Mom attended the event and spoke of the emotional realization that we are not alone; we are truly a part of a very large family (I know just what emotion my mother is speaking of; it is the feeling we get at any similar function we attend). Two very special people participated in this relay in honor of Caitlin: a very good friend of my mother’s and my very good friend Lisa. Thank you, from the bottom of our hearts!

Thursday, June 3, 2004 7:16 PM CDT

What an exciting few days this has been! After clinic appointments and a good review, we were able to leave Rochester just as planned. We were so happy to finally get home --- our house looked beautiful after all this time away! Our grass was green, the trees were full, and we were with Mighty! Our little Schnauzer has grown up after all this time away and she has even changed colors! Dan, of course, was thrilled to have “his girls home” --- and as always it was a happy reunion!

Caitlin was able to attend the last two hours of school on Wednesday. She had me walk her into the building, but she walked in to her classroom by herself as if nothing had happened --- she just said “Hi Mrs. Kelly!” and took her seat as usual! She never even looked back at me! What a big girl!

We had a family get together prior to the Graduation and Awards ceremony. All of the Couppee family (the Elliott’s are much too far away, but I know they did want to be here) visited with us before the ceremony, and it was great having them with us at graduation. Truly, having family there made the evening much easier for us; I am certain that we would have cried much harder had they not been there. Caitlin was welcomed with open arms, many hugs, and many cheers. At the end of the ceremony (and unbeknownst to us) Caitlin was brought out onto the stage where her teacher announced that the class wanted to do something special for her because of all the strength she has shown throughout the year. Each of her classmates, in turn, presented Caitlin with a colorful carnation --- and she received a standing ovation from all! It was a very special and moving moment, and what a lovely thing for her class to do. There were other wonderful moments, such as her friends hanging a poster from the balcony railing saying “WAY TO GO CAITLIN!!!” and Caitlin’s 2nd grade teacher attending the ceremony just to see her graduate. And in the yearbook a young girl wrote of her future goals “I really want to be a pediatrician when I grow up, especially because of how well Caitlin Couppee is doing”. It seems our little girl has touched the hearts of many, and that the many hearts of Adams have touched ours.

With all the activity and excitement, Caitlin unfortunately did not feel well enough to attend the last day of school. I know she hated missing this very important day, but she did the right thing in her decision. She has rested on the couch today and just watched television; she knows better than anyone just what she needs. I have spent the day with the chores that I love and have so missed --- laundry for Dan, straightening up, and unpacking a few boxes. With all that Caitlin has accumulated over the past 9 months, I believe it will take me months before I can unpack and sort out everything!

Tomorrow we will return to Rochester. Caitlin has pending appointments on Monday at the hospital for another IVIG infusion, and then later that day she has clinic appointments. We have finally been given a tentative home date of either June 16th or 17th --- our count continues!

This is Day + 90 of Caitlin’s new life, and there is still no sign of Graft vs. Host or re-emergence of CMV infection!!!

Monday, May 31, 2004 8:32 PM CDT

Caitlin is doing extremely well. To say the least, the change in her since hospital discharge is nothing short of miraculous. She looks good and feels good! And not once, since Thursday, has she complained of nauseousness! Dan could not believe the change since he'd last seen her; he even said "we've got our kid back!" Her Mayo team was, once again, oh so right.

Not only has Caitlin been able to tolerate the aggressive and progressive schedule of g-tube feeds set up by Dietary, she's taken more without complaint. Her caloric needs are 1600 per day --- and she left the hospital receiving only approximately 250 calories per day. She now is able to take approximately 700 calories a day, and I feel she'll be up to goal in no time!

Caitlin and I had tremendous fun throwing away some of her medications the other day; her schedule of meds is much less now. And I am also happy to report that as of today she has finally been totally weaned off of all narcotics; the last Fetanyl patch has just been removed!

We had a wonderful weekend with Dan; we are once again just a regular, happy family! We took Caitlin to the closest Chuck E. Cheese's so she could play games --- in LaCrosse, WI! During the ride home, we were in a 'tornado warning' and we actually saw three funnel clouds!

I have been busy packing up our room at Ronald McDonald's, and cleaning as I go. I cannot tell you how happy I am in doing these chores! We believe that this weekend's visit will be Dan's last while here in room 210; he loaded his truck today with many boxes and bags of stuff we've accumulated up here!

Caitlin and I are anxious for our trip home this week as well. We will have to return to Rochester on Friday, but that's ok! Permanent home status is right around the corner!!!

Thursday, May 27, 2004 11:10 AM CDT

I had forgotten to mention this, but when we went to the movies again on Tuesday, Caitlin made her first attempt at real food. She drank a few ounces of a cherry slushee and nibbled on some popcorn. I was so pleased! Her nurses were also thrilled to include this information in that evening's "report" (report is a written account of what occurred during that nurse's shift with the patient. It includes who visited, what was discussed and done, what was eaten, etc. It is also how everyone involved in Caitlin's care knows everything!). I had no idea at the time how significant that popcorn was.

Beginning with the time I first heard a Care Conference was scheduled regarding Caitlin and up until the time it was over late yesterday afternoon, I worried about it. I had been told it was a somewhat unusual type of meeting and not done for many pediatric patients; certainly one has never before been held for Caitlin. I lost sleep over the statement "what has been accomplished and what yet needs to be done" and worried what else Caitlin would have to go through. I was told the group present would be large and that all teams would be represented. I was told nursing staff, ChildLife personnel, floor residents, and our social worker would also be present. I was told this group would brainstorm and that I would later be invited in; Caitlin would not be present at all. Caitlin's nurse that morning prepped me to "write your feelings and questions down" and further told me that "you'll be overwhelmed so it's best to have it on paper". As the morning wore on, I worked myself up into a total frenzy. Before the conference I was told Caitlin was to be discharged and then I really worried --- what does all this mean?

But as it turned out, the Care Conference was a wonderful thing. I was brought in and welcomed; I was so relieved to see before me only friends --- and friends that had worked so hard on behalf of Caitlin. Dr. Moir pointed to a chair and kiddingly said "there is your hot seat"! He then immediately asked me "when you gave Caitlin that popcorn yesterday did you realize you were testing her?" I answered that I knew popcorn was hard to digest, but that I felt if Caitlin wanted something she should have it (I was a bit defensive). Dr. Moir then said "but you gave her popcorn! Do you realize that popcorn causes partial obstructions? Do you realize than no scan, GI series, colonoscopy, or any other test can prove better than popcorn that her belly is working just fine?" Given this information, Caitlin's team had decided that no further testing was needed!

From there and with the ice broken, all went well and I was hapy to hear that the teams were just working out the fine details of Caitlin's release --- not just from the hospitalization, but from her 2nd cancer, transplant, surgeries, the whole nine yards! It was a discussion of how to get Caitlin home for graduation, and how to keep her home for good! I was also later thanked for my help as a member of the team, and I in turn was able to thank the group as a whole for saving the life of my child --- and getting her well. I left the conference shaking like a leaf, and shedding tears of joy.

Given the fact that she was being discharged and hearing the news of her passing the "popcorn test", Caitlin seemed to finally accept that she is well. She announced "we've done it Mommy! And we're really going home!" Later last evening Caitlin walked the halls and took Polaroid pictures of her favorite nurses. She told all that she is "out of here!"

I later realized that in the course of one day, Caitlin and I had both been given closure to a very long chapter in our lives.

Wednesday, May 26, 2004 12:38 AM CDT

Caitlin's schedule of g-tube feeds for the past few days has been quite different than ever before. A normal pattern of eating breakfast, lunch, and dinner has been simulated; she receives three 'pushes' of food each day with each push running over the course of an hour. In the evening while she is asleep she receives an additional 10 ml per hour; the pump is shut off long before she awakens. She is shown exactly how much will be going in and the amount is compared to, for example, drinking a glass of orange juice. Loving care such as this and the new schedule has seemed to help Caitlin get over her fear at feeding time. These past two days she has been able to tolerate more and she has been able to keep down her medications on the first attempt.

We have been out on pass from the hospital for the past four days. While she is still not quite herself, Caitlin does seem improved when away from St. Mary's. During the time out, I have to give her some medications and am responsible for her lunchtime push of food. Yesterday while at our room and after the push she screamed "Mommy Mommy"! I came running thinking something really horrible had happened --- but she excitedly told me "I don't feel nauseous"! This sweet, little girl then said "you give me my medicines just right" and "you're a better nurse than any of them at the hospital". While I know this is certainly not true, it meant the world to me that she felt it. It also reassured me that when she is released I'd be able to give her the care she needs because she's comfortable. I'd really worried about this, because this hospitalization has been different from all others.

Her psychologist has explained to me that what's going on with Caitlin is a common occurrence. She's had trouble with her belly for so long, it is difficult to believe the problem is truly fixed. I was also told that just being in a hospital can physically make a person ill by association; in other words you're in the hospital therefore you are sick. Because I have seen Caitlin do better away from the hospital and then I see how anxious she is upon our return, I believe perhaps this is the issue now at hand. And when I think about it, I'd much prefer her to have a psychological issue vs. a physical problem. Caitlin has been instructed on the use of several different coping techniques.

It was explained to me that Caitlin has also developed what's referred to as an "oral aversion" to food. It has been so long she has actually forgotten what food tastes like, so she no longer craves it and the thought of it can make her ill. I was told the story of concentration camp survivors and how when they were released and could eat whatever they wanted, they were physically unable to. They had to be fed very small amounts of soup every few hours, with gradual increases over a long period of time. I am told the process of getting her back to normal eating patterns may take a very, long time.

In a surprise move by her team, we were informed that Caitlin will be released from the hospital tomorrow. All TPN has been stopped and the thinking here is that she will never eat while being fed through her veins. Additionally, Gancyclovir infusions are done as of today. Requirements of her release and how her g-tube feeds and eating should progress from here will be decided at the Care Conference this afternoon. Caitlin was also told that she had better get ready to graduate from Adams School --- because she will be attending these upcoming events!!!

Monday, May 24, 2004 12:07 AM CDT

Last night when I spoke with Dan he told me that he was "sitting down and admiring our very clean home". With the help of good friends, family, some hired help, and the diligence of my husband the house is now ready for Caitlin's safe return. We are so grateful to all for the much-needed help, as a sterile environment is one of the requirements of Caitlin's return home. The bathroom project begun last year is now finished and Dan said "it is beautiful".

Now that our house is ready, the questions of when and if remain. I was so hopeful after our pass on Saturday; Caitlin had done well! But since then Caitlin has been unable to tolerate even her medications and these unfortunately have to be given a second time. G-tubes feeds are not working either, no matter type of schedule or product is tried. Our pass out on Sunday also did not go as well as the one before. Her nausea seems to be just as crippling as abdominal pain --- it gets so bad she does not even want to move. At this point, I do not see how she can be released from the hospital; she needs that TPN.

Dr. Khan (whom we're so happy to have on hospital rotation --- she's like a breath of fresh air!) remains positive that this is only a temporary setback. Her visits throughout the day seem to help Caitlin. We are told this nausea could be from the transplant or it could be from the medications which are now being tapered. GI and the surgical team continue to say that Caitlin should be well.

There is something called a 'Care Conference' scheduled for this Wednesday on Caitlin's behalf. It is a meeting of all who have treated and known Caitlin; there will be discussions on what has been accomplished and what has not, and ideas of her care will be brainstormed. I am included in this meeting as well.

We will once again today be out on pass, and we are going to see the movie Shrek 2. Hopefully, this will get Caitlin's mind off of the nausea.

Saturday, May 22, 2004 3:06 PM CDT

Try as I may, there truly is no way to capture the drama present in our lives. Each day before us unfolds as never expected and most days play as if a picture show. Families of sick children come and go from our lives; sometimes children complete treatment and are allowed to go home and others don’t respond and pass away. It is after all the reality of disease, but one that is not easy to bear.

The death of Sebastian has profoundly affected me and I keep seeing him over and over in my mind blowing me kisses here in the halls of St. Mary’s. Surprisingly, Caitlin seems unaffected and has only been worried about me. This has not been the first friend she has lost, nor will it be the last. Our dear friend Ashley who suffers with Mitochondrial Disease has gotten progressively worse and her Mom tells me she is not expected to make it through the year. Caitlin and Ashley haven’t talked much lately, but they do seem to take tremendous comfort in just sitting together. My Mom has always said that “no one ever said it would be easy” and we have learned time and time again that this is so. We tire of the lesson.

Caitlin’s condition is much the same, although there is one big difference today. She was “booted out of the hospital” on pass and it has done her worlds of good! And we don’t have to return to the hospital until 5:00 PM! Several different things are being tried to control Caitlin’s nausea and to get her to a feeling of normalcy. Her team continues to say she is well and that “we will get her there”. I will continue with my prayers and hold onto the belief that she will once again walk out of here --- and that she will be another of those “Miracles of Mayo”!

Friday, May 21, 2004 3:18 PM CDT

I truly dislike saying this, but apparently Caitlin has a few more ups and downs to go through. In another one of those turn of events, she is once again feeling ill. Feeds have been attempted but she said that these are making her "more nauseous than usual"; these feeds have been stopped and restarted many times. She once again does not want to walk. Goals have been set for her to get out of the hospital such as taking oral medications instead of intravenous and elimination of all narcotics and IV Benedryl. Caitlin has no desire to do any of these things, nor does she want to try. She flatly refuses to leave the hospital, and today she even turned down a pass out for a few hours. She states that "I am not ready".

Dr. Moir said "it is not possible that there is something else in her belly". Dr. El-Yousef reports "all her blood counts are wonderful and she should be amazingly well". Dr. Khan feels that Caitlin is just not used to the feeling of fullness in her belly, and that her motility is sluggish after so much inactivity. It was suggested that Caitlin eat a scrambled egg and toast with carefully measured radioactive material in it, and that she be monitored every hour to see how this passes through; Caitlin refused. Erythromycin is once again being tried, and Buspar has also been added.

I was later told that a psychologist might be beneficial to Caitlin, and that this person could provide needed encouragement that neither I nor the doctors have been able to provide. Although I initially protested, I did remember that 3 1/2 years ago Caitlin was helped by a psychologist after a lengthy and brutally hard hospitalization. When Caitlin later admitted that she doesn't want to eat for fear of vomiting, I realized that as always these Mayo doctors know what they are doing --- we have to trust and believe in them! Caitlin has been through so much and it makes sense she might need help getting past it.

This hospitalization has certainly been getting to me, and Dan and I agree that this one has been the worst ever. I cannot believe there is more to go through! Where we should be celebrating the near end of another long journey, we are still full of doubt and questions that no one on this earth can answer. I did something last night I've not done before; I left the nurses and ChildLife personnel in charge of Caitlin and left the hospital at 6:30 pm and did not return until 6:00 this morning. I wish more than anything than Dan was coming this weekend.

Yesterday we also learned of the passing of a beautiful, young child we've known and loved. Although he valiantly fought, little Sebastian lost his battle with cancer. He will be remembered always.

Wednesday, May 19, 2004 2:47 PM CDT

There is much excitement in the air as another school year quickly comes to an end. With only 10 school days left loose ends must be tied, papers graded, report cards marked, and graduation held before that door can be closed. Children are counting the days til the magic of summer can begin and they are dreaming of long, fun-filled days. Although Caitlin's school year has been much different from others, she shares the same excitement as her classmates do! But she does have one extra dream thrown in --- the dream for home. With each passing day and her slow but steady progress, we believe this dream may soon become a reality. But like the loose ends that have to be tied at the close of a school year, Caitlin's medical condition has to be tested, evaluated, and graded before she is allowed to 'graduate'.

There is much that needs to be accomplished in the next few weeks. First and foremost is this present hospitalization and the question of when she will be discharged. From a surgical point of view, she is doing great and is clearly able to get around much better now. Recent x-rays even show a normal abdomen. Caitlin has, however, returned to that post-transplant state of nauseousness and occasional vomiting but as Dr. Khan states "this is to be expected". After discharge (which we hear will be this week!), Gancyclovir infusions will continue until June 11th. The tapering process off Tacrolimus has begun and will be finished by July (Tacrolimus is the immunosuppressant that causes Caitlin's tremors --- and we will be so happy to see it go!). She will have final tests, scans, and bone marrow aspirations. If these are passed, her long-term catheter will be removed. The g-tube will be kept in place until she is able to resume normal eating. With all my heart and soul and with every prayer and positive thought I know will make a difference, I believe all goals will be met and all tests passed. We continue our countdown, and this is Day + 75 with hoped-for home date at 25 days!

In the final analysis, we will have spent a total of 9 months here in Rochester, MN; a chunk of our lives has been stolen, but yet a much bigger one has been given. Lost time can be made up and holidays will come again next year. But the one occasion that could never be made up is Caitlin's upcoming graduation from Adams Elementary. I am happy to say that after much discussion, Caitlin's team has agreed to allow Caitlin to attend her graduation ceremony and the last day of school! She had wanted this so and we are very happy that she will be able to attend! She will be able to see all of her friends and teachers, and say a proper goodbye to this wonderful school and the people that have taught her and helped her so much! This school will be missed! Months ago Caitlin received a warm note of welcome from Williams Middle School, and the notice that she will be on the White Team. I have never seen such excitement in her, nor have I been more proud --- this child that missed out on her year of finally being an upperclassman. But it was her wish to graduate and leave behind the comforts and familiarity of her beloved Adams. She is so brave!

With our home visit only 2 weeks away, Dan is certainly feeling the pressure; there is still much to be done before Caitlin can safely return home. But Dan has enlisted the help of family and friends for clean-up this coming weekend. Duct cleaning, drapery dry cleaning, and rug and upholstery cleaning will be done this week as well. And I have finally begun the process of packing up our room at Ronald McDonalds! After so many months here, this is sure to be a chore --- but a happy one to say the least!

Friday, May 14, 2004 2:27 PM CDT

Of all the happy times in my life, I cannot right now recall a happier moment than yesterday when Caitlin took her first steps after weeks of being crippled and bedridden with pain. And as with everything that she does, she pushed herself to the limit --- she not only took a few steps, we actually went for a 20 minute walk! Caitlin's presence out in the hall certainly did not go unnoticed --- ChildLife help, nurses, and doctors came running to applaud her success! It was another one of those emotional moments out of many!

Although she can't easily get around and every movement requires careful concentration and effort, she is recovering. She reported to her team that she no longer feels the pain in her lower abdomen that's been bothering her for months; now she only seems to have pain from the surgery. Her nauseousness, although still present, seems less severe. She also has not had a fever nor has she vomited since surgery. And after many weeks of turning her tutor Michelle away, Caitlin has started school once again. All is well in our world!!!

Tuesday, May 11, 2004 1:27 PM CDT

Yesterday Caitlin had what we hope and pray is the very last of her exploratory abdominal surgeries. As Dr. Moir stated “it went better than expected” and that “much less work had to be done”. The mystery has been solved and the problem has been fixed! We are so relieved and so very happy that this part of the journey is over. Once again, we have been blessed.

Caitlin was in very good spirits yesterday, and she showed absolutely no fear. As she said “I know what to expect!” When she was escorted from her hospital room she told her day nurse to “prepare for the pain meds!” and she later told the Anesthetist “don’t let me wake up during the surgery!” She also questioned the need for her to wear a surgical cap because “after all I only have a little peach fuzz!” Dr. Moir eventually relented, and Caitlin was allowed to go ‘cap-free’.

Dr. Moir later explained that the two problem areas were in fact caused by scar tissue referred to as adhesive bands. He said that these bands were “almost like pieces of wire that encircled the small intestines and were strangling the gut”. These bands were on the outside and were easily removed; no resection was needed. Dr. Moir also used a product called Seprafilm to cover the area, which will help prevent future scar tissue from developing; this product does eventually dissolve. He said all else looked good. And much to our surprise, Dr. Moir also changed Caitlin’s G-J tube back to a G-tube saying that there now is no need to bypass her stomach.

Whereas Caitlin is still having severe pain, we know that it is from the surgery. But we are hopeful that she will recuperate quickly and soon will be walking and playing like any other child! We are also hopeful that the possibility exists that we may be home as originally planned! We are saying our prayers and we know that you are too!

I am happy to say that this is Day + 67 with 33 days to home!

Saturday, May 8, 2004 2:16 PM CDT

It was decided that Thursday would be a day of rest for Caitlin. Given her behavior in the CT room and her later refusal to be examined by Dr. Arndt, all were very concerned and did not want to traumatize her further. Her team agreed, however, that the contrast enema must be done followed with an additional scan and x-rays. Caitlin was given the product ‘Go Lightly’ with the hopes that this would clear all old contrast from her system.

Apparently it was extremely out of the ordinary doing a contrast enema and it took some careful planning and arranging to accommodate giving sedation in the GI diagnostic area. Equipment had to be transported from the surgical floor and the anesthesia team brought in. All in all, there were about 10 people in the room with Caitlin! When she and I were finally brought into the room, all necessary supplies were covered so that Caitlin would not see. Caitlin was handled with loving care, and I tell you I’ve never been more appreciative of this wonderful Mayo staff.

Dr. Matsumoto met with me when it was over. She said that she wanted to show me an image, and as I was looking at it she quietly said “I believe I’ve found it”. This obstruction had been looked for in so many ways and for so many months! And we had even been told it might never be found! Yet here before me was a picture of the thing that has caused Caitlin so much suffering --- and it truly looked awful. The image showed a portion of her intestines with the upper and lower sections appearing to be the size of three fingers and the connection between appeared as a mere thread. Dr. Matsumoto told me that she actually found two areas of concern that Dr. Moir would have to look at. I could only thank and hug Dr. Matsumoto, this dedicated doctor who has made such a difference in the life of one very special patient. When Caitlin was returned to her room after an hours’ stay in recovery, the first thing she said was “my belly feels great!”

Whereas we are frightened for Caitlin to have to endure yet another painful bowel resection, we are also relieved. There is a plan now and a course of action to fix it! We truly have known for months that this was inevitable --- as you all have probably known as well. Even Caitlin herself has said that she needed more surgery! This surgery is tentatively scheduled for Monday and will be done once again by Dr. Moir. Of course, Dr. Arndt had to throw in a little dose of reality… she said “now let’s just hope that Dr. Moir sees what Dr. Matsumoto saw”. I don’t even want to think about that! Dr. Arndt has also referred to Caitlin’s belly problems as the “complications of cancer”.

Caitlin seems much improved now that her belly has been cleaned out. She has even today asked me to leave the hospital for a while so she could make me something for Mothers’ Day! This will be the first time she has done anything in several weeks, and whatever it is I will treasure it always.

Happy Mothers’ Day to all you wonderful Moms out there! And a very special wish for my own Mom and Dan’s Mom, two women that continually provide us with strength, encouragement, and love!!!

Thursday, May 6, 2004 9:32 AM CDT

I still cannot help but think of what happened yesterday in the CT room, and how terrified Caitlin was. I had not heard her speak above a whisper in almost two weeks, yet she mustered up the strength to scream. I have also not seen her move so quickly in many, many months. This poor child!!! Yes she has been through too much, and she darn wells knows it! She also knows how unfair all of this is --- and she's sick of it! She later told me that her doctors have done enough scopes, biopsies, and tests and that she's not letting them do anymore. More than anything, I wish I could will this so.

Things are very bad this morning. Caitlin is not well at all, and she continues to vomit even though her feeds have been stopped for quite some time. There is now talk of possible perforations in her intestines due to the growth and death of Lymphoma. Dr. Arndt said she has seen this many times with Lymphoma, and that this could go on. I told her that I did not think Caitlin could go on like this. Erythromycin has been stopped. This contrast enema will be done today and Caitlin will be sedated. I do not have the heart to tell her.

Wednesday, May 5, 2004 5:23 PM CDT

Yesterday Dr. Matsumoto from Radiology refused to do another GI series or another x-ray study on Caitlin. She is the Radiologist that has done all such studies on Caitlin from the very onset of her abdominal troubles beginning 3 ½ years ago. She is the woman that personally gives us results and spends time with each explanation. She is also one of the doctors that we have tremendous faith in; in fact, we’ve postponed studies if she were not available. Dr. Matsumoto felt that another study would just reveal what has previously been shown --- what appears to be a blockage, but then the matter does slowly go through. This has been referred to several times as “slow transit”. Dr. Matsumoto recommended that G-J tube feeds be attempted, and that another study be done perhaps next week. It was my understanding that the problem area cannot be pinpointed and that the surgeons won’t operate blindly (unless absolutely necessary) until they know what they are looking for and exactly where it is. Because this new tube bypasses the stomach, the trouble area should be better defined. Tolerex was resumed at 5 ml per hour.

In rounds yesterday, I asked Dr. Arndt if Caitlin would be able to eat (since her stomach is bypassed). Dr. Arndt’s reply was “there is absolutely no need for her to eat” and her needs are being met”. I asked “but can she?” and without a blink of an eye she answered “we prefer not”. Although I had anticipated that this would be the answer, I still felt like screaming at this woman and I wanted to ask her "what about the quality of life?" but I stopped myself (sometimes I have to remind myself that this is not anyone’s fault). Dr. Arndt also went on to tell me about “motility of the gut” and that perhaps Caitlin’s problem stems from that. She explained that Caitlin will be started on an antibiotic called Erythromycin which is used to treat infections, but that it is also helpful with the action of the esophagus and intestines in propelling food and liquid through (called the peristalsis wave). I thought how wonderful it would be if Caitlin’s belly troubles could be fixed by just taking an antibiotic… and I am hoping and praying this does the trick.

As with other matters in life, up here we choose our battles wisely. One thing Dan, Caitlin, and I decided to fight against was this physical therapy issue. Caitlin is in so much pain and she has cried so even over the thought of any movement. I could only agree with her that PT was not a good idea. This is one tough kid and I’ve seen her push herself to the limits when necessary. But right now she is just not able. She just wants to be left alone and is tired of “people messing with my belly”. So we went to bat and fought the good fight, but ultimately lost the battle. Dr. Arndt’s references to the fact that Caitlin has been “curled up in a ball for over a week” and that she’s “never seen Caitlin like that” decided the matter, and in all honesty it seemed we did not have a choice. Although Caitlin was promised physical therapy is “not like gym class” and that “the therapists are gentle”, she is still extremely upset.

On a positive note, I have been assured that Caitlin’s condition is not life-threatening. All are convinced they will get to the bottom of the trouble and that Caitlin will be fixed. But I was told this problem-solving will take some time. Dr. Arndt said “I can’t promise you Caitlin’s cancer won’t come back in 2 months or even a year, but for right now it is not an issue”. Enough said.

But that was yesterday, and today was certainly a different day. Even with Caitlin’s feeds going at a minimal rate, she still developed intense pain and began vomiting again. The GI doctor was even in the room as Caitlin began to scream and she was horrified at what she has been dealing with. She quickly explained that from a GI point, there truly was nothing else they could do. Caitlin’s biopsy results were normal, and the other option of ingesting a tiny camera that would pass through Caitlin’s abdominal tract (and would of course get stuck) had been ruled out. Dr. Matsumoto was consulted and told of the new development, and she agreed that another study had to be done.

When the GI series began, Dr. Matsumoto saw old contrast in Caitlin’s belly. She asked when Caitlin had had her last GI series or her last CT, and I answered that to the best of my knowledge it was when Cait was admitted through the ER and that it was about 10 days ago. Dr. Matsumoto explained that the contrast should have been passed almost immediately. The GI series was abruptly stopped, and Caitlin went for a CT scan.

After the CT, Dr. Matsumoto told me that she was not getting the information that was needed. She explained that a new way of looking at things was needed, and that she wanted to give Caitlin a “contrast enema” and that they would proceed immediately. However, Caitlin had her own view of things. When she was told about this enema, Caitlin began to scream and let me tell you it was blood curdling. She literally bolted upright and ripped off the Velcro belting that was holding her in. Within a moment, she would have jumped off that table and run for her life. Within moments, the tiny room filled with technicians and all were trying to calm Caitlin down. My daughter’s hysteria was heartbreaking, and not only for me --- I actually saw one of the technicians crying as well. It was awful. Dr. Matsumoto told me that “if it were any other child, I would just make the child do this. But this is Caitlin, and she has been through so much. This can wait until tomorrow, and we will put her asleep first”. We are so tired of all that Caitlin must endure.

Tuesday, May 4, 2004 10:44 AM CDT

It has been another of those long weeks. Caitlin slept almost non-stop for 6 days. When she was alert she would not smile nor would she even speak other than ask for more pain medication. Not even Dan’s arrival brought a smile, and his departure brought no tears. Her doctors assured us it was the pain medications (she has been on so much she even has to be hooked up to monitors 24 hours a day) and that she just wasn’t feeling well. But what Dan and I saw was severe depression, and worse yet it seemed that she had given up hope. We have seen Caitlin in many bad ways throughout her lifetime, but some small bit of her has always shone through. Last week we saw no signs of ‘her’.

On Saturday Caitlin finally seemed to awaken, and although still not quite herself she was feeling a bit better. We had missed her so much! Her fevers had continued (still unexplained) so her pending procedures had been postponed. It just broke my heart that just as she was beginning to feel better she was brought to the operating room. She was scoped and biopsied as I previously mentioned, and an infant scope was used to hopefully avoid the bleeding she had last time this was done. Her G-J tube was put in, as well. After 3 ½ hours she was brought back to her room; she was in a lot of pain and she was crying. She told me that “the doctors shouldn’t have done it. It just brought back all my pains”.

The report from GI regarding the scopes was good --- no ulcers were found. It did not appear that Graft vs. Host or an infection was present. We are awaiting biopsy results. The next step, I am told, is another GI series. I am also told Dr. Moir (the surgeon) will once again be consulted. I am one distraught mother, and Dan is worse since he is back home now. We know the doctors are doing everything possible --- their care is not questioned. But we also know that Caitlin is very fragile right now. And we are sick of all that she must endure. We are clinging to the results of her recent PET scan --- and no presence of cancer.

Caitlin is to begin physical therapy, and this also breaks my heart. Because she has spent so much time in bed, she is beginning to get weak and is losing muscle.

This is Day + 60 after transplant. I no longer feel encouraged to count the days until home.

Thursday, April 29, 2004 2:35 PM CDT

I am happy to report that Caitlin’s PET scan results are absolutely normal! This is wonderful news, for Dan and I knew in our hearts that the doctors were once again looking for tumors. She had not had a PET since the middle of January.

With the worst scenario eliminated, the doctors were then focused on the next possible cause. The jejunostomy planned for today was postponed and an endoscopy and another colonoscopy with biopsies was planned to eliminate Graft vs. Host disease. Today we actually even made it down to the surgical floor and were talking with the anesthesiologist when Caitlin developed chills and a fever. The procedure was cancelled, and Caitlin was returned to her room. Labs have already been drawn and are awaiting cultures, and IV antibiotics have been started. I asked Dr. Rodriquez what on earth could be going on now (she hasn’t had fever in weeks), and she replied only that it could be a possible infection. Although this is a setback, we are confident that Caitlin's team will get to the bottom of her trouble.

We also had a problem with one of the nurses last night; actually, we’ve had a problem with this nurse since Caitlin began her care up here 3 ½ years ago. But last night was the final straw when this nurse refused to give Caitlin her IV Fetanyl and told us that it was discontinued. She also made some sort of wisecrack about Caitlin always having pain. Because Caitlin was having significant trouble at the time, we then asked to see the floor resident or the doctor; this nurse also refused saying that “if she gets real bad, I will call”. Finally, Caitlin did fall asleep. This morning we found out that this medication was never stopped, and Dan and I were furious. We thought about what to do, and decided that if we knew this person was a good nurse and that she just made a mistake that we would have let it go. But this nurse has consistently been very rude and inpatient with Caitlin. Now I do realize that Cait can be a handful when she is not feeling well; she will buzz continually to ask for meds and this does keep the nurse hopping. But still, this is a sick child that needs attention! And this particular child has been through enough! So this morning we made a complaint, and this woman will never again have the opportunity of ‘caring’ for our child again.

I want to thank all of you once again for your continued love, support, and prayers. It means the world to us, and even though Caitlin is in a bad way right now your prayers really are working! Thank you!!!

Wednesday, April 28, 2004 10:05 AM CDT

It is Day + 54 with the hoped-for countdown to home at 46 days. Today, however, the road home seems much longer.

Caitlin has had a very rough time and is in quite a bit of pain. She sleeps all through the day and night and wakes only to ask for more pain or nausea medication. She has a Fetanyl patch with additional Fetanyl given by IV every 30 minutes, is taking Tylenol with codeine, and Ativan for pain. For nausea she is given Benadryl and a new medication called Kytril. Morphine is avoided for it slows the bowels. Even with all of the above, when alert Caitlin continues to say that her belly hurts and she feels nauseous.

The Tolerex for g-tube feeds was attempted, but then was stopped after 15 hours. Caitlin had received about 150 ml of nutrition, but even this small amount caused her significant pain. TPN (feeding through the veins) has begun.

Although Caitlin’s Oncology team prefers an aggressive approach and would like this section of the intestine removed, Dr. Moir is proceeding conservatively. Today a PET scan has been scheduled, and Caitlin will be transported by ambulance to the Mayo Clinic; a nurse will accompany us. I am a bit unclear as to all the details, but a jejunostomy is planned for tomorrow. If my understanding is correct, Dr. Matsumoto from Radiology will insert a tube through Caitlin’s gastric balloon while guided by x-ray or ultrasound. This tube will bypass her stomach and go into the jejunum. Ultimately, Caitlin should be able to be fed through this. But the true purpose of the jejunostomy is to “challenge the belly with the hopes that the problem will better present itself”. We are so sorry Cait must go through yet another procedure.

We are once again in that ‘hurry up and wait situation’. The stress is unbelievable, but as my Mom says “you wouldn’t know what to do if you didn’t have something to worry about”. It’s sad, but I suppose true; it gets to almost be a lifestyle after a while. But the stress I can deal with; Caitlin in pain I cannot. I hope that whatever is causing her trouble is found, and I pray it has an easy solution.

Dan arrived last night and I am so glad he is with us.

Tuesday, April 27, 2004 11:54 AM CDT

Dr. Moir came by late yesterday afternoon as promised. He very honestly admitted to not knowing what exactly to do about Caitlin’s belly. He explained that Caitlin’s recent CT scan did not show anything ominous, but that there were several small bowel loops and a few very large ones. He also stated, however, that “there is an obvious thickening of a portion of the abdominal wall”.

Dr. Moir and all involved are very concerned with Dan’s observation that Caitlin seems to have this trouble when she finally reaches goal with her g-tube feeds. I had not realized this, but Dan is so right! I have not mentioned this before, but Caitlin has tried several products for her feeds and she has not seemed to be able to tolerate any of them. The product she’s recently been on is called ‘Peptomen Junior’ and this product is designed for infants. Caitlin’s regular dietician Sharon was consulted and at her recommendation another product called ‘Tolerex’ is now being attempted at very low doses. Tolerex has a very thin consistency --- almost like water --- but it has all caloric and nutritional needs that Caitlin must have. Sharon said “this is the very last product to try” and that “if Caitlin cannot handle this it will prove some sort of surgical procedure is necessary”.

My conversation with Dr. Moir ended with his decision not to perform surgery immediately. He said he needed to think about this and to consult with Dr. Rodriquez (Oncology) and with Dr. Matsumoto (Radiology). I had the feeling that he had more to say, but was holding back.

I know I’ve said this before, but I have to say it again --- I can’t believe with are here again. I cannot tell you how frustrated, how sickened, and how tired we are of all that our child has to go through. She has been through so much and it’s getting to the point that I just want to scream “enough is enough”! The only problem is that I don’t know who to scream this at!

Whereas just one week ago Caitlin was fairly well, this week is a whole different scenario. She has lost weight and appears skeletal. She wakes up only long enough to ask for another pain medication.

No matter what is decided from here, it will be the right thing. I have every confidence in her medical team here --- they are the very best! I can’t believe that last fall we considered going anywhere else. My Mom talks about the “Miracles of the Mayo” and it is true. This is the place to be if you are sick. Caitlin is in very good hands and we know as always that everything is being done.

This week especially, please keep Caitlin in your prayers.

Monday, April 26, 2004 4:06 PM CDT

Although we try and try again to maintain some sort of normalcy in our life, there does tend to be constant reminders that our life is anything but normal. The other night, Caitlin and I visited the small town (pop. 1079) of Mantorville, MN just 15 miles outside of Rochester. It’s a beautiful little place with a breath-taking park and waterfall, quaint shops, and much to Caitlin’s delight an old-fashioned candy store. We had a wonderful time exploring! Later on we stopped at the well-known Hubbell House so I could have dinner; she was full of happy talk and I enjoyed a terrific steak. When we had entered this restaurant it was empty, but later it was doing some business. Towards the end of dinner an older couple sitting next to us struck up a conversation; we exchanged pleasantries and chatted about this and that. The woman then asked if she could have the picture Caitlin had been drawing on her place mat; she said her children were all grown and that she’d like to put a picture on her refrigerator. Caitlin was happy to oblige and even signed the picture at this woman’s request. When the picture was given and the woman realized Cait had drawn an angel she sheepishly asked “do you draw a lot of these?” and Caitlin answered “yes”. Right then and there this woman began crying and blurted out to me that “I feel so sorry for kids like this”. I was stunned; I had had no idea that anyone in that restaurant could tell anything about us. When we said our good-byes and walked out, all conversations stopped; it was so quiet you could have heard a pin drop. As we drove back to Rochester, Caitlin was quiet with her thoughts and I of course had my own tears.

We also attempted at normalcy Saturday. It was Caitlin’s 50/50 day --- 50 days post-transplant with 50 days until home. In celebration and to make the long ride easier for Dan, we decided to meet in Waterloo and spend the night in a hotel. We had looked forward to this rendezvous --- it had been 2 weeks since we’d last seen him! It was a happy reunion and things started off well. But leaving Rochester sealed our fate; later that evening Caitlin developed abdominal pain and by early Sunday morning the pain was quite strong. We quickly kissed Dan good-bye and headed back. By 6:00 AM we were in Rochester, by 10:00 AM we were in the Emergency Room, by 11:00 AM Cait was having a CT scan, and by 1:30 PM she was hospitalized. So much for a normal weekend.

Just as before and in the same place, Caitlin has developed an obstruction. Since this has happened several times before, another bowel resection is seriously being considered. There have been many consults but no official decision has yet been made --- this decision will ultimately be for Dr. Moir. Although Oncology has let him know that something needs to be done and that surgery should take place, he could still decide to wait. We will see Dr. Moir sometime this evening and will know more then.

Caitlin is extremely depressed about the possibility of another surgery and another recovery. I myself just do not know what to feel.

Friday, April 23, 2004 2:45 PM CDT

When we began this journey seven months ago, I had no idea what the future had in store for us. Certainly I knew the road would be bumpy --- all of us did. But in my heart I questioned whether Caitlin would survive another cancer and a transplant. Considering how well she has done, I believe another miracle has occurred. Caitlin has endured and triumphed through each hurtle thrown her --- and has come through a bit spoiled (we can’t help but spoil her when she’s sick!) but nonetheless unscathed. Although her life has been plagued with difficulties, she doesn’t seem to realize it nor does her attitude reflect it. All who know her applaud her strength and perseverance!

We all believe our children are special (and they are!); but I not only believe mine is, I know it. Twenty years ago I was told that it was medically and physically impossible for me to have children --- but years later Caitlin was born!!! She was just meant to be, and she was meant to be ours! From the very beginning she has been a miracle and a blessing in our life. Her miracles continue to this day. And although a lot of bad things have happened to our little family, a great many blessings have occurred along the way.

Caitlin has had a fairly good week, although fatigue is still an enemy. She has been sleeping up to 18 hours each day! I was very concerned for this seemed a bit more than usual. But Dr. Arndt was reassuring, however, and explained that this should be expected for up to one year after transplant. She explained that “total body irradiation is such a tremendous assault against the body” and that “it takes all the strength the body can muster to recover”. Dr. Arndt went on to explain part of the reasoning behind keeping children out of school for up to a year after transplant is that “the body is so busy recovering that children aren’t able to concentrate on anything else”. Dr. Arndt said that although the 100th day after transplant is a milestone, Caitlin will still be a long ways away from being back to her normal self when we return home.

At clinic this week, our return home and the next year was finally talked about. I have learned that Caitlin will still need to be seen quite frequently here at the clinic (how silly of me to think our family doctor at home could care for her). We will need to return to Rochester every two weeks for the first few months, and thereafter she will need to be seen every month for the next six months. At the next appointment, I will ask if Caitlin can be seen on weekends at the hospital instead.

Other things noted this week are that Caitlin’s liver enzymes are now thankfully down to 57. What a relief! She had developed Thrush in her mouth again due to excessive anti-biotics, but thanks to Diflucan this is now gone. She is back up to goal with g-tube feeds and hopefully she will begin putting on weight (she presently weighs in at 52 lbs.). Other good news was that her recent Echocardiogram has shown no change in her heart. Her eyebrows and eyelashes are again growing back, but no sign of hair on her head.

It has been a long two weeks since we have seen Dan. Caitlin and I are glad that the weekend is almost here and that we will be seeing him soon! Dan also is under the care of the Mayo Clinic, and has pending appointments the end of next week --- we’ll see him a lot then!!!

Sunday, April 18, 2004 3:29 PM CDT

Caitlin’s doctors certainly couldn’t have picked a better week to relax guidelines --- the weather has been beautiful here in Rochester! It has been wonderful to be out and about again! We have been shopping at the mall, gone to several parks, seen the movie ‘The Prince and Me’, and painted ceramics at a local craft shop. What fun! Although Caitlin still does not have the strength to go for a walk, we have decided to try walking to St. Mary’s for her infusions just as soon as she is able.

Her days are just as the doctors predicted --- some are good, and others are very bad. She will go days without feeling sick, and then all of a sudden her nausea and vomiting will return. Yesterday was one of these bad days; for a few hours I even thought she may end up in the hospital again! Fatigue continues non-stop. But she does know how to pace herself, and will say “I need to sit down now” and she’ll sit no matter where she is. Frequent naps and rest periods throughout the day help her tremendously.

Although she continues to be fed via her g-tube, normal eating is of course encouraged. This is still a problem, however. Some days she will pick and snack on chips, candy, or cereal; other days she will go entirely without. I am so grateful for her g-tube; all that she needs including water and medications can go through this on the days when she just can’t take anything orally. Her doctors were so right --- she would certainly still be hospitalized if not for this miraculous thing called a g-tube.

Caitlin had a terrific report at clinic Friday. Dr. Arndt said that “Caitlin’s counts are fabulous” and that “they continue to improve each week”! Although her liver enzymes are still high at 89, Dr. Arndt did not seem concerned. Caitlin is Lymphopenic (low white cells) --- a condition she’d had all of her life due to her immune disease. Now she is severely Lymphopenic, but the reason is said to be due to transplant and the immunosuppressant medication she will need to be on for up to 6 months. Her Tacrolimus level seems to have stabilized at 1.6 ml twice daily. Her skin continues to peel due to radiation treatments.

The best news we received from the clinic is that the results of a recent study show that 99% of Caitlin’s blood cells are male (yes, blood cells are either male or female!). This means that the donor’s stem cells are working and are almost totally producing all her blood cells! This is wonderful news, and her team is thrilled! It will still be months or perhaps years before her transplant is deemed a success, but she is certainly on her way!!!

Dan, nephew Scott, and best friend Bill have been hard at work this weekend on the bathroom project that was begun last summer at our home. The job won’t be finished this weekend, but a great portion of it will be complete. Since unfinished projects and construction cause excessive dust which could be harmful to Caitlin, this job must be finished! There is so much to do, and we are now working off a list of things that need to be finished before Cait’s return. We must have the ducts cleaned, draperies dry-cleaned, all carpeting and furniture shampooed, counters bleached, inside and outside of everything cleaned and dust-free, all bedding and pillows washed, and all walls and especially windowsills cleaned. And the worst of all will be Caitlin’s room! All old toys have to be discarded (and her closet is full to the ceiling!!!) and her many Mayo patient bags full of new toys unwrapped! Whew!!! But this is the fun stuff --- planning on return home!!! For so long we didn't know if we'd be able to bring her home; now the time is just around the corner! We are so very happy!!!

Tuesday, April 13, 2004 1:15 PM CDT

This is Day + 39, with our hoped-for countdown to home at 61 days. Caitlin is back to her normal post-transplant self --- fatigued and nauseous. But as quickly and abruptly as the abdominal pains began, they have just as quickly subsided. Her pain now is only intermittent, and they are manageable.

We were given no explanation for her pains at clinic yesterday. All biopsies surprisingly were normal. And although no diagnosis was given, the term ‘gastritis’ was used. Dan and I are at odds on what to feel --- either relief from the fact that no news is good news, or skepticism as to whether she has seen the last of her belly troubles. Only time will tell. Dan also tells me “don’t worry just to worry”!!!

Rather than dwell on the unknowns, Dr. Arndt focused on the positives --- and there are many! We do believe in miracles!!! Specifically she talked about how “Caitlin breezed through the transplant”. She also said that “Caitlin is not out of the woods yet, but she is doing great”! It has also been noted that Caitlin has in fact grown ¼ of an inch!!! These are all very good things indeed!

We have also found out that Caitlin is now allowed a bit more freedom and this is real progress. She now only needs to use a mask when in large crowds or at a park. She no longer is confined to our room at the Ronald McDonald House; she may go out in the house and make use of the game room, computer room, etc. She is also allowed to go to a movie --- as long as it’s a weekday matinee. We may even go out for a walk, but we must stay away from woods and construction areas. Her baths and catheter site-care are now only every 3 days; this will be wonderful, as her skin is so sore from such frequent tegaderm changes. She may also now have visits from children, as long as they aren’t ill or recently been exposed to anyone who is. We are thrilled with the new guidelines, and honestly don’t know what to do first!!!

Dan left for home last night, and it was another tearful goodbye. This time, however, we will not be seeing him for two weeks! Since the countdown to home is on, Dan will begin working on some things around the house that have to be done before Caitlin’s return. We have a lot to do before Caitlin can safely go into our house!!!

Saturday, April 10, 2004 4:51 PM CDT

We have had days similar to what we’ve had in the past. Time spent waiting for the next pain medication, tears from hurting so bad, and tests. Yesterday Caitlin underwent both a Colonoscopy and Endoscope with biopsies. Dr. El-Yousef from GI has initially reported that her intestines “didn’t look bad and didn’t look good”. We should have the final report by Monday. Dr. Anderson from Oncology tells us that “things always seem to turn out better than expected” and that they are trying to “give you one diagnosis vs. several”. To us, this just seems like the same old thing that’s been going on for too long.

Although Caitlin continues on high dosage pain medication, she was released from the hospital this afternoon. She no longer gets infusions on the weekend, and this will be a nice break. Her liver enzymes have steadily decreased (normal enzymes are in the 20 – 40 range; Caitlin’s were at 175 just days ago). Thankfully, her liver enzymes are now down to 85.

Dan arrived here at 11:30 PM on Thursday, and will be with us through Monday.

Wednesday, April 7, 2004 12:39 AM CDT

Evidently, things had just been going too well. Yesterday after Caitlin's morning infusion she developed severe abdominal pains. This was definately "sudden onset", for there was no build up --- it was just all at once there. We spent 8 hours in the Emergency Room, where she had several CT scans done over the course of the day. She was given more pain medications than I have ever seen her take, and still nothing seemed to help. Dr. Matsumoto from Radiology reported that Caitlin once again has a partial blockage, but nothing large such as a tumor was present. We then had surgical consults and they of course mentioned that dreaded word "surgery" and "nose tube for decompression". Caitlin was later admitted.

It was a very long night, and neither of us got much sleep. But today she does feel a bit better. Her team today reports that there could be a few things going on; adhesions from past resections which could work themselves out or require surgery, an infection of some sort, or it could be the start of Graph vs. Host disease. Tests are pending. For the past week her liver enzymes have steadily increased and because Graph vs. Host can involve the liver this is a real possibility. Gancyclovir possibly could also affect the liver so she is now to only receive one infusion per day. A pretty fancy test done this week for CMV infection was negative, so this has been ruled out.

We are discouraged that Caitlin once again is in pain, and hope that whatever it is will work itself out. Dan and I are very worried about Graph vs. Host, but Dr. Anderson is a calming presence. He still has not told us to "start worrying".

Friday, April 2, 2004 11:58 AM CST

After months of chemotherapy treatment we’d grown accustomed to counts dropping, a period of neutropenia, and then recovery. We had been forewarned that Caitlin would not feel well for many weeks and possibly months after pre-transplant conditioning. We were also told she would have good days and then she would have really bad days. But no amount of forewarnings can truly prepare anyone for such a lengthy recovery time. Caitlin had been worried this would just go on and on --- and we were worried as well.

But I have to tell you, yesterday her ‘minutes of normalcy’ stretched into hours. She woke up feeling good, and this continued well into the afternoon. She was full of chatter and spoke of going home and all the happy times she would again have there. She even asked when Ashley and her cousins could sleep over again?!? She also wrote a terrific story about our puppy Mighty, and we have submitted it to Disney Adventures’ Cool Pet Contest! And never to let April Fools’ Day go by without a gag, she surprised me with an ooey gooey bug in my shoe and brown goop on the remote! What a kid!

Caitlin is now on Day + 28 of her new life. With the days adding up and nothing horrible happening (we’d been warned of so much!), Dan and I are beginning to feel so much better. I know this is also true for Caitlin. Although she always appeared not to be interested in transplant talk, I know she truly was soaking up all potential side effect facts. But I can clearly see that this week she is less concerned --- those worry lines that she’s perpetually had on her brow for months are now gone!

The problem I had the other day with her FK506 level has been resolved. I now bring this medication each morning to the PITC (Pediatric Infusion Therapy Center) and have the nurse check the level and give the morning dose. It is a double check for me, and then I know exactly what to give at night. Now that we have worked out a routine and are getting a bit used to it, I am also less stressed than before. Her infusions continue, and we’ve recently been given a schedule of appointments until June 11th (is that when we can go home???). She will receive IVIG on Monday and each month thereafter for a time --- but she will no longer require these permanently! That was really good news!

It seems now that Caitlin is wearing a mask and carrying a pump with obvious tubes, people are paying more attention to us. Wherever we go, people stop and stare! But there is also a crazy thing going on too… people want to talk to us as well! We have gotten more smiles than I can count, and strangers seem to want to comfort us with touch. My back has been rubbed so many times!!! At first it upset Caitlin that so many people would stare, but now she seems to enjoy the attention. Pretty soon I expect her to begin hamming it up as usual!

Today begins Caitlin’s Spring break, and she is thrilled. I am happy myself, for this means our schedule is less hectic. It is beautiful out today and the grass is starting to green. I wish we were allowed to go for a walk! I’ll admit we’re going a bit stir crazy... but it is worth it!!!

Tuesday, March 30, 2004 4:12 PM CST

Initially Dr. Bramm thought Caitlin’s fever was due to the onset of Graph vs. Host Disease or was the return of a Cytomegalovirus infection. Thankfully neither of these appeared to be the case, and last weeks’ fever remains unexplained. Caitlin was released from the hospital on Sunday after a 48-hour period of negative cultures and no additional fevers.

With each day, Caitlin shows a bit more improvement. She also even now has moments of feeling absolutely normal! She has begun consistent schooling again --- it has been a week since she last turned her tutor away! She no longer has the burning sensation from radiation in her hands and feet, and with this gone baths are much easier for her. New teeth can also be seen in her mouth in the spaces that have been there for several years; we hope this is a sign of future growth! And although she continues to vomit, Cait has tried a few bites of solid food and her fluid intake has improved. G-tube feeds have progressed to 50 ml per hour, and she’ll soon be at the goal of 58 per hour 24-hours per day.

By far the worst side effect Caitlin deals with is the fatigue. She says that at times “my arms and legs just feel floppy and I can’t do anything with them”. If allowed, she would stay in bed the entire day. Thankfully her busy schedule of clinic appointments and twice-daily infusions at the hospital keep her somewhat active. I try to continue to push her to sit-up, walk, etc. but admit that this is difficult.

At clinic today, I found out that this schedule we are on will continue until the 100th day after transplant. Because she has had a Cytomegalovirus infection in the past, she will need to be infused with Ganciclovir every day. New medications were also added. I have also found out that although I was instructed on Sunday to give her .6 ml of FK506 twice daily, the concentration of the dosage given by pharmacy was different and I should have in fact given her 1.2 ml twice daily. Both Dr. Arndt and Dr. Rodriquez have tried to explain the difference in concentration levels and volume, but I admit I just do not get it. I finally told the doctors that “I am not a nurse nor am I a pharmacist”, and asked “can’t you just tell me exactly what dose I am supposed to give?” I hope this is not too much to ask! Our schedule is so busy, and I have wished that we could have a 24-hour nurse doing meds, site-care, taking care of the pole, etc. so that I could just concentrate on being Mom. But it is just not feasible.

Friday, March 26, 2004 11:33 AM CST

Thank you all so very much for the supportive e-mails sent us! You have brought me to tears once again, but they are tears of joy!

I do now, however, need to report that Caitlin is once again back in the hospital. She had a worrisome and unexplained fever last night, and her team felt it best she be brought in and started on intravenous anti-biotics right away. She was upset to return so soon after release, but I told her an infection was expected days ago --- she'd done so good and stayed strong for all those extra days! This seemed to help. But what really did wonders for her was the fact that she is in the general pediatric section of the hospital (it doesn't even matter that she's in a hepa-filtered, isolation room)! She has all the well-known and much-loved regular nurses back!

As instructed, we do not view this as a failure... just a precaution.

Thursday, March 25, 2004 3:24 PM CST

After only a 25-day stay in the Transplant Center, Caitlin was in fact released Tuesday. We are so fortunate and blessed that all has gone so well, and that Caitlin stayed so strong throughout. I cannot help but think of the young man who was recently released after receiving his sisters’ stem cells --- he’s a big, 15-year old strapping boy standing 6’2”. His hospital stay was 5 weeks long! And our daughter is out after only 3 ½ weeks! Caitlin (all 51 pounds of her) is a powerhouse! According to the team, Caitlin did in fact break a record with her early release!

What a rollercoaster ride this has been. If it were not for this journal, I might have forgotten some of the things that have happened! When I asked Caitlin her thoughts on her recent treatment and transplant, she responded with the question “that’s it?” She then said “I can’t wait to get home and to forget all about this. I have a life and it’s not here!” Enough said.

From here and if all remains well, Caitlin will only need to be seen on an outpatient basis. She may need to be re-hospitalized, and I was instructed if this happens to not view it as a failure. I was warned that there is “no margin for error with transplant kids, so we are compulsive about their care”. I would certainly expect so.

Her homecare is phenomenal, and I have to admit to being overwhelmed. I am sure, however, with time I will get used to it. Her medications are plentiful, and some of the doses change daily according to her recent labs. Her g-tube feeds continue 24 hours per day. She has clinic appointments just about every day, and these tend to be quite lengthy. She also has to be infused twice daily at St. Mary’s Hospital (at 9:00 AM and 8:00 PM) with Ganciclovir, which prevents infections caused by cytomegalovirus. Apparently, Caitlin has had CMV in the past and her recent transplant may re-introduce this virus.

Other than these appointments, Caitlin is to remain in our room to avoid unnecessary exposure. Right now Cait does not seem to mind the quiet of our room; she still does not feel well. She continues to vomit, and is very tired. But she has already asked Dr. Khan when she can go to a park!

The Couppee family thanks all of you, once again, for your continued love and prayers. All our prayers have been heard!

This is Day + 19 of her new life, with the countdown to home at 81 days!

Monday, March 22, 2004 8:42 PM CST

Our blessings continue. At last report, Dr. Anderson said "Caitlin's lungs sound better than I've ever heard them". He also reported that her ANC on Sunday was 640, and today the count was at 750. Engraftment has begun, and at this point the chance of graft failure is minimal! He also reported that "we are past the point of worry about organ toxicity due to treatment and transplant" and "now the biggest concern is infection". He said "we are at the point of transitioning her from inpatient to outpatient". He then apologized (can you imagine) for pushing us to push her, and said he knew it was a hard thing to do when your child is not feeling well. He said "at this point I consider myself as knowing this family pretty well. I knew I could ask this of you and that we'd be on the same team".

I was alone with Dr. Anderson when we had this conversation. We spoke without any other team members present, and we just had this nice, quiet talk --- yet with his soft-spoken way and gentle manner came such powerful words and so very much relief. I was overcome with emotion, and with just such deep gratitude. This great man had just let me know that Caitlin has attained a tremendous goal and has surpassed a giant obstacle! When I started crying and thanked this man for once again saving the life of my child, Dr. Anderson was just as he was when I said these same words to him three years ago. He acted as if no thank you was necessary, and then quickly left the room.

It is amazing to me at what a body can do. Caitlin is now producing her very own platelets, white cells, and red cells! She has bounced back so quickly! There are still issues, however, but these will resolve with time (nauseousness, vomitting, pain, eating and drinking, etc.). But her numbers are great!!!

Believe it or not, Caitlin was allowed out on pass to our Ronald McDonald room only (and wearing a mask) both yesterday and today! She was so happy to be out of the hospital! The very first thing she did when she got to our room was of course climb to the upper bunk! It was wonderful. And I am also happy to report that because these two passes went so well, she will be released to my care tomorrow!!!!!!! I cannot believe we are where we are.

Saturday, March 20, 2004 8:07 AM CST

Winter has always been one of my favorite seasons, and each year I've looked forward to lots of snow. But after spending two winters in Minnesota, I've had my fill for a lifetime of cold and snow! Caitlin and Dan wholeheartily agree.

Today, the promise of Spring is in the air. The snow is finally melting, and the days seem longer. This re-birth of life is perfectly in step with the process that is going on in Caitlin. Each day her new immune system grows, and each day she gets stronger because of it.

We have had several good reports from Caitlins' team this week. Her counts continue upward, and she is right on schedule! Initially we were told Cait's recovery would take longer due to her immune disease, but this is not the case at all --- she is recovering better than expected! I believe we have been blessed with yet another miracle!

This week we have learned about engraftment, and now know that this process has begun when the ANC (Absolute Neutrophil Count) is greater than 500 for two consecutive days. ANC reflects the body's ability to fight infection, and a normal count is greater than 1000. Caitlin's ANC is presently at 300, and her team is thrilled! We are told she will begin engrafting this week!

Dr. Anderson spoke of what we should expect from here. He said there will still be fevers, and ups and downs. He said she will be released from the hospital (should no problems arise) within the next few weeks. We will then begin our "incarceration period" here at our Ronald McDonald home. Caitlin will be seen initially at the clinic 3 or 4 times per week, and with the passage of time these appointments will be less frequent. If she stays well, we may return home 100 days after her transplant --- which is June 13th!

We were also given other wonderful news by Dr. Kahn. We may keep our beloved puppy Mighty! We have been so worried about this, as we know there are many things that Caitlin cannot be exposed to. Several times Cait has pleaded with Dan "promise me Dad you won't give Mighty away". Now, he will be able to keep this promise! Although she will not be allowed to see Mighty until after the 100th day, the long wait will certainly be worth it --- and much more tolerable!

Thursday, March 18, 2004 7:27 AM CST

Caitlin's condition remains delicate. When one thing improves, another goes wrong. All tests recently done are negative, and no reason has been found for her horrific back pain. She is on many pain medications --- included are heavy doses of Morphine. She is itchy everywhere and scratches incessantly. At first we thought it was a sign of Graft vs. Host Disease, but no rash has appeared. We are now told she is reacting to the Morphine. She is given many anti-biotics and we are told she has "coverage for everything". The pain medications and the Benedryl given to help her nauseousness leave her extremely sensitive, moody, and tearful.

Dan is back, and his girls are grateful. It was just too soon for him to leave, when so much is going on. Cait has been through so many bad times, but this still remains by far the worse. Her team checks in on her constantly, and are available to us on a moments' notice. The days seem to be measured by when she may get her next medication.

She has had more transfusions, and once again reacted to platelets. The more transfusions she gets, the more she reacts to them. Her blood counts do show improvement, and we are told she is on the way up. One of her doctors has bet that she will begin engrafting in as little as 5 days!

Tuesday night she received what we hope and pray is her very last ever chemotherapy drug. This is a celebration in itself! From here, we can only see that she should be feeling better each day.

Tuesday, March 16, 2004 2:49 PM CST

Caitlin's condition has changed. Yesterday she developed a low backache and pain in her upper thighs, which quickly became severe. I was initially told this was caused by "dis-use atrophy", and that she needed to get up out of bed more. We tried this, but the movement only seemed to make matters worse. No amount of medication, heating pads, back rubs, etc. helped. This morning she got so bad she screamed for a healthy body so she wouldn't have to hurt anymore. When Dr. Anderson and Dr. Inron arrived, Cait was pleading for them to "help me". It was enough to just break your heart. Finally, Caitlin was given a large dose of Morphine and a PCA pump for her own control. She has been comfortable since.

I am now awaiting test results, and am quite anxious about this whole thing. Dr. Anderson said "Caitlin could be bleeding behind her abdomen. She'll probably need more platelets" (she had received platelets last night, but obviously must need more for she's had several nose bleeds today). I was also told Caitlin could have "Sepsis", which is from toxins in the bloodstream and very serious. Infectious Disease seems to think the pain could be caused by Typhilitis (an inflammation of the bowel caused by Neutropenia and chemotherapy). Her initial lab reports did not show anything, so now her pancreatic enzymes and other things are being checked.

Dan is on his way back to Rochester. I'm afraid we just cannot do this without him.

Also, yesterday I had to complain about the cleaning staff. Caitlins' tub had not been cleaned in two days! I was so angry! Caitlin has to cleanse germs from her body every day, and with an unclean tub she would just be sitting in her own dirt! And then there's her g-tube opening! The thought of this happening in a hospital (never mind the PICU and never mind the Mayo!) when she is at such high risk just makes me ill.

Monday, March 15, 2004 7:38 AM CST

Today is Day 10 of Caitlin's new life. She is improved, and does better with each passing day. Although she sleeps quite a bit and needs several naps throughout the day, when awake she now plays games and enjoys her toys. She continues to push herself, and shows a strength that I never thought possible. She attempts to eat, and is frustrated when it just comes right back up.

Her pain is now somewhat under control. She once again has a Fentanyl patch and additionally receives Adovan. Although she may still get Morphine, she has not asked for it in 2 days. Her mouth sores are bad and now even bleed. The irritation around her g-tube site is improved. She still is being fed through her veins with TPN, but g-tube feeds have resumed at 5 ML per hour 24 hours a day. She has developed a worrisome cough, and will have another chest x-ray done today.

Yesterday her counts were "as low as they can go". She is at high risk for infection right now. Transfusions continue. Apparently her white cell count will take the longest to recover, meaning she will be neutropenic for the next few weeks. She has not yet received Neupogen (which helps the white cell count) because supposedly right now it would not help. Germ control is extremely important, and I am afraid to kiss her. There is much she cannot do because of germs. Although she is allowed 2 visitors in her room, no children are allowed to visit.

Although there are still issues and many goals to yet achieve, we have heard a new word that is music to our ears --- "stable"! Dr. Anderson reports that Caitlin's condition is now stable! She is still considered 'critical care', but so far so good!!! We are thrilled to have this new word added to our current vocabulary! Dr. Anderson also said that "we are impressed with Caitlin's progress" and that "we have to plan for her release"! Be still my heart!!!

There is much to learn in the weeks ahead before Caitlin's release from the PICU. She is on a special diet, and is not allowed any fresh fruits or vegetables. She may only eat freshly prepared food, and is not allowed any take-out or restaurant food. Does this mean she is not allowed boxed cereal or canned soup? I need some clarification!

Dan and I are so relieved and so happy that our daughter is at this point. It has been a long time coming. We pray daily that she continues down this path to recovery, and know and appreciate that you help us in this endeavor! Dan has gone home (a very good sign), and will return to work today. Unless something happens, he will visit us on weekends only. And last night I slept better than I have in months!

Friday, March 12, 2004 5:57 PM CST

It has been a very long week. Caitlin has been through so much, and it has been difficult for Dan and I to watch her suffer. She now has mouth sores, and her throat is irritated from vomiting. Her hands continue to tremble, and she has terrible headaches. Her mood for the most part has been down, and many times throughout the week she would not speak when spoken to. Dr. Anderson has been pushing her to get up and walk, and she replied that "I just want to be left alone!" This week certainly has been a challenge.

Her teams still report that all is well. Labs and organ function are good, etc. She has begun getting transfused with blood and platelets, and because of her recent transplant she is considered "transitional" and receives different type blood. Each time she spikes a fever, labs are drawn but as of yet no culture has been positive. She has developed an irritation around her g-tube site, and we are told "there is a colonization of yeast there that could develop into a blood infection". She is on many antibiotics and anti-fungals, and is being followed very closely by the Infectious Disease team. Dr. Boyce from this department even said "Caitlin is our Number #1 patient right now". Although Dr. Khan is back on clinic rotation, she still visits daily. Dr. Arndt visited Caitlin today, as well.

The team has tried many things to cheer Caitlin up, such as betting on when she will start engrafting and names for the new, very large stuffed dog she was recently given. With each vote or bet, the team member deposits $2 in an envelope that is hanging on Caitlins' door. Caitlin will either win all the money or share in the winnings. Since she has always been interested in 'making a buck', she is very interested in this! The doctors promise that she will make some money! ChildLife has also been wonderful to her, and they have brought up many projects for her to complete. Dan and I continue to pick up new toys for her daily, and as Dr. Khan said "we need all of these type techniques!"

There are other bets going on here too. Because Caitlin's hair is now growing in (she'll lose it again though, because of radiation), the nurses are betting what color it will be! After chemotherapy, one's hair usually will grow back a different texture or color. Three years ago, Caitlin had straight, thin brown hair. After her first chemotherapy, it grew back thick and curly. This time it appears to be growing in blonde! Caitlin said, "at least it's not red!"

Today, we have finally seen improvement in our daughter. She woke up in good spirits, and this great mood continued throughout the day (although she still will cry at the drop of a hat). She walked several laps within the transplant center, and then cycled on a stationary bike. She really pushed herself, but the effort sapped all of her energy. We had to carry her back to her bed. After she rested, she said she would keep pedaling because her goal is to get out of the PICU within 1-1/2 weeks! Dan and I agree that she is the toughest person we have ever known. We are so very proud of her.

Dr. Anderson reports that Caitlin will still have many more ups and downs. She has yet to develop an infection, and this will almost certainly come. Since she is still receiving chemotherapy to combat Graft vs. Host Disease, her counts will once again drop. March 16th will be the last day of Methotrexate and we are counting the days! All in all though, we consider ourselves very lucky that Caitlin has not had worse things than what she has!

Construction and repair from water damage still continues at the Ronald McDonald house. With the new construction, six special suites were built --- intended for those having long-term stays. The usual suites have a sleeping area and a bathroom; the extended stays have bath, sleeping, and a living area. These suites also include a couch, table and chairs, microwave, small refrigerator, and bunk beds. Because the Couppee family has been here so long, we were offered one of these suites! Caitlin was so excited! It was quite a bit of work (we have more stuff up here than I had thought), but I did manage to pack up our old room and clean it for the next family coming in. And just today, I have finished unpacking and making our new place our home away from home. Caitlin is now looking forward to spending time at the Ronald McDonald house, and making the top bunk her own very special place!

Dan has been with us these past several weeks, but he is thinking of heading home this weekend. Although I dread to have him leave us, I realize that he must work when Caitlin is doing reasonably well.

Monday, March 8, 2004 6:17 PM CST

As expected, Caitlin is now very sick. Everything hurts, especially her belly. This morning for several hours she just screamed in pain, and for a time Dan and I feared the worse. She was given Morphine, Fentanyl, and Adovan and although these numbed her body it didn't ease her pain. It got so bad that an emergency CT scan was finally done, and we now know that Caitlin has sores similar to Crohn's Disease on her small intestine (this is just what happened other times when she was neutropenic). Dr. Anderson feels that this will continue until her counts recover in several weeks (on the positive side, however, no cancer was found on the CT and this was the best news).

For months Caitlin's skin has been sensitive, but now post-radiation it is much worse. Her daily regimen of showers and catheter site care is painful to her. She is also extremely sensitive to smells, and most times she covers her nose with her favorite Power-Puff blanket (the one that she has carried with her through every treatment, procedure, and surgery for the past several years). It seems that almost anything can make her nauseous. Although there is nothing in her belly, she vomits many times throughout the day.

We knew she would get sick, but apparently we just did not grasp how bad it would be. These weeks are going to be so hard, and I pray she has the strength. She said that "today was the worst day of my life".

Dr. Khan has been wonderful, and continues to reassure us that all is as it should be. She reports that Caitlin's organ functions are well! Although she still will be in charge of Caitlin, she is now back on clinic duty and Dr. Anderson will be here at the hospital. And although we have had a hard time adjusting to the new rules and regulations of the PICU, today in our emergency situation we have seen how truly wonderful the nurses here are. Caitlin is in very good hands.

I am happy to report that the boy who received his sister's stem cells just last month was released from the hospital today after a 5 week stay in the PICU! We are so happy for them, and also can see there will be light at the end of the tunnel. With his departure, Caitlin is now the only patient in the transplant center!

Saturday, March 6, 2004 12:15 AM CST

It is done. Caitlin's very special delivery arrived here early this morning, and she was infused with new stem cells within 45 minutes. The process itself was quick, because red blood cells had been removed and the volume was so small. We were amazed at how tiny this package was, but how it carried so much power within! Dr. Khan has assured us that the team was very happy with the amount of cells Caitlin received. Apparently, the normal amount of cells for a BMT is 2 or 3 million per kilo. Caitlin received over 25 million cells per kilo, and this increases her chance of the graft being a success!

We had hoped Caitlin would sleep through it, but she was wide awake and very alert as to what was going on. There was much activity in her room at 2:00 am! We had been told that her blood pressure could be extremely high during this time, but thankfully it did not happen. She had only mild side effects of headache, nauseousness, and itchy skin --- and these gradually subsided.

By no means was her infusion of new life anti-climactic for us. We have fought, alongside Caitlin of course, for her health and well being since the day she was born and began getting sick. It took so much to get her to this point --- and now she was being given a chance to live a normal, healthy life! And a good life is just what this wonderful child deserves!

It was also amazing how masterfully orchestrated this whole thing was. There were infinite possibilities of things that could have gone wrong. My goodness, we even worried that the plane that carried Caitlin's cells might have crashed! But the teams' hard work paid off, and all went well!

From here, we have much to be concerned about. Will the transplant take? Will she get acute or chronic Graft vs. Host Disease? When will she begin engraphment? Tomorrow her counts will be zero, and we know she will truly then begin to feel the effects of her recent treatments. She will soon have painful mouthsores. Since she continues to vomit and her g-tube feedings are not going so well, Dr. Khan would like her on TPN for a few days. She begins Methotrexate tonight, and this will make her very ill. Also, because she is severely immuno-suppressed now there is much concern about germs and infection. But as Caitlin said "I've been concerned about germs my whole life!" We are old pros where this is concerned!

It will be many weeks before Caitlin feels well, and many more weeks until she has energy. But Caitlin's attitude, and ours, remain positive. She is a champ, and a practiced warrior! She is our hero!

Friday, March 5, 2004 11:31 PM CST

Caitlin's stem cells and her new life should have arrived at the Mayo Clinic lab at 10:00 pm. We are told that Caitlins' red blood cells and the donor's do not match, and that all these type cells will be removed prior to transplant. Dr. Kahn told us "Not to worry! This is done all the time!" This process will take several hours, so now the transplant is scheduled at approximately 2:00 am.

I do not know what kind of process is involved in removing red blood cells, but Dan and I have said many prayers tonight for the technician in charge of this. In fact, tonight we have said prayers for all the many people involved in this transplant and in the tremendous and wonderful care Caitlin continues to receive. We are indebted to all!

We are so happy and grateful that Caitlin has this chance. Had this happened just ten years ago, there would have been no option. She only needs one more miracle!

Friday, March 5, 2004 12:17 AM CST

The day is finally here. After a very long road, Caitlin will be transplanted today. We hope and pray that this will be the end of her health troubles, and that all will be smooth sailing from here.

Caitlin is fairly well today. Although she continues to vomit, she is pushing herself to eat. She is absolutely amazing, and so very strong. She also looks wonderful today, and amazingly enough her eyebrows have grown in!

Her radiation treatments are finished, and she will not be receiving chemo today. Tomorrow will begin 4 days of Methotrexate which is considered chemo, but it is done to combat Graft vs. Host disease. She is now getting an IVIG infusion which should help her feel better, and she continues on FK506 which keeps her body from rejecting the transplant.

A new sign has been added to Caitlin's door, I believe put up by ChildLife. It says "TODAY IS MY TRANSPLANT DAY!!! March 5th, 2004! HOORAY FOR CAITLIN!!!" Of course, it brought tears to our eyes! But today we are very calm here, and very happy that the time has come. Dan and I are confident that our little girl will be ok! We have been told that the actual transplant itself will be anti-climactic, but we cannot see how this is possible. There is tremendous excitement in the air!

We get the impression that Caitlin's donor is on the other side of the world, and we are told her new cells are coming "from very far away". The tentative time for transplant is at midnight, and Dr. Khan will supervise. Dan has asked the hospital chaplain to bless these new cells, so he will be with us as well. We cannot help but think of the donor, and all that he is going through right now. We have been told that we may write this man a letter or that Caitlin can draw him a picture. This correspondence must go through the National Bone Marrow Registry, who ensures that no confidential facts or information is disclosed. I have started a letter to this man many times, but I always end up crying and have to stop.

We now have a laptop computer for our use right here in Caitlin's room. This will certainly help us pass the day, and we will be able to keep in touch.

We feel very blessed and comforted to know that so many prayers are being said for Caitlin today. Thank you all!

Thursday, March 4, 2004 10:09 AM CST

Conditioning progresses. The team feels all is as it should be, but for us the process is horrible.

Caitlin is not well. She's had fever, diarrhea, cannot eat (even through her g-tube), and is vomiting. Her hands shake uncontrollably. Her counts are dropping faster than we thought possible. She has reactions to one type of drug or another, and she breaks out in hives. She has terrible belly pain, but x-rays are negative. She seems to be worse when receiving the chemo drug Campath. She hates radiation, because her skin tingles and her hands burn. She is back on heavy narcotics and antibiotics, and we are grateful when she sleeps.

She is transported by ambulance twice a day to the Rochester Methodist Hospital for her Total Body Irradiation. We are allowed to ride with her. No one is allowed in the room when treatment begins, but we are able to walk her into the room. We also stay with her as she is fitted with diodes, the machinery is aligned for her shape and size, and the protection for the one filling she has in her mouth is inserted. Her eyes never leave ours at this time, and when we have to leave she clutches for us. We are so sorry for all that she goes through and wish more than anything in the world that it was us going through this. Although there aren't enough toys in the world to make this treatment easier, we always have a new beanie baby for her after each radiation treatment.

As her parents, we must stay positive and remain strong for her. Now that this process has begun we cannot show any fear. We must have smiles on our faces. Our words to Dr. Kahn were "we are anxious, but excited too". We know that right decisions have been made, and that it is time for Caitlin to have a new immune system.

This is Day -1, and transplant day is tomorrow. Snow is expected here in Rochester, and we hope it doesn't interfere with Caitlin's very special, hand delivered stem cells. We think of Caitlins' donor, as well.

Unbelievable as it is, at this the very last minute our two insurance companies are battling it out over which is primary and who is secondary. All clauses are being looked at. I have been stressed, and have spent much time on the phone trying to sort this out. Dr. Kahn tells me not to worry, that the transplant is approved, and that no insurance company can take back that agreement.

Friday, February 27, 2004 1:07 PM CST

We have spent the morning in the Cardiology Department at the clinic, and have met with 4 cardiologists. After a lengthy visit, we were told that Caitlin does in fact have a heart issue --- though it may not necessarily develop into a problem. I cannot believe that at this, the very last minute almost, something like this is being brought to light. Although I do not quite understand these type matters of the heart, I will explain to the best of my ability.

In December of 2000 prior to Caitlin's first regimen with CHOP chemotherapy, she went through a series of tests (just like what she recently had) to record a baseline of the function of her organs. At that time, her heart and its' function were normal. Her recent tests show that her left ventricle (which pumps blood) is somewhat enlarged. Also, something called the "ejection fraction" (the amount of blood pumped out per beat) is on the low side. Her numbers are not extremely worrisome, but because a change has been noted her heart needs to be closely monitored. Cardiology has been permanently added to her medical team. The plan right now is to give Caitlin daily electrocardiograms for the next month or so, and to have echocardiograms every 6 months.

I am told that the reason for this change in her heart could be caused by one of two things. It could have been caused by the Kawasaki Disease Caitlin had in August/September of 2001, because this disease may affect the arteries of the heart or the heart muscle itself. Or the change could be due to the fact that Caitlin had the chemotherapy drug called 'Adriamycin' during her first regimen with chemotherapy --- it's one of those "long-term effects" that usually show up years after the fact. When one of the cardiologists asked Caitlin if she had any comment on this heart issue, Caitlin jokingly replied "it's just another issue on top of many other issues".

We later briefly met with Dr. Arndt, who instructed us to report Caitlin to the hospital at 4:00 PM tomorrow. We were told not very much would happen that first day, although Caitlin would be receiving medications and extreme hydration. Pre-transplant chemo will begin early Sunday morning.

Today, we begin a new calendar. It is now the countdown to transplant day, and today is considered 'Day - 7'. Transplant day is 'Day 0', and the days following will be plus days. These plus days are considered to be the days of Caitlin's new life. They will also begin the countdown to engraftment, when the donors' stem cells begin producing normal blood cells.

And somewhere in the world, Caitlin's donor will also soon begin his own kind of calendar --- a calendar of appointments prior to the actual harvest itself. Since Caitlin's donor elected to have his stem cells collected from his bloodstream (called a 'peripheral blood stem cell harvest'), he will be receiving daily shots of Neupogen (such as Cait receives after chemo). These shots cause blood stem cells to move out of the bone marrow and into the bloodstream. On transplant day, he will go through the Apheresis process that Caitlin went through in the collection of her own stem cells. I imagine that this man (our Superman!) has been thinking quite a bit about Caitlin, although he does not know her name. This special man right now only knows that there is a sick child somewhere in the world that is battling cancer for the 2nd time.

Friday, February 27, 2004 1:07 PM CST

We have spent the morning in the Cardiology Department at the clinic, and have met with 4 cardiologists. After a lengthy visit, we were told that Caitlin does in fact have a heart issue --- though it may not necessarily develop into a problem. I cannot believe that at this, the very last minute almost, something like this is being brought to light. Although I do not quite understand these type matters of the heart, I will explain to the best of my ability.

In December of 2000 prior to Caitlin's first regimen with CHOP chemotherapy, she went through a series of tests (just like what she recently had) to record a baseline of the function of her organs. At that time, her heart and its' function were normal. Her recent tests show that her left ventricle (which pumps blood) is somewhat enlarged. Also, something called the "ejection fraction" (the amount of blood pumped out per beat) is on the low side. Her numbers are not extremely worrisome, but because a change has been noted her heart needs to be closely monitored. Cardiology has been permanently added to her medical team. The plan right now is to give Caitlin daily electrocardiograms for the next month or so, and to have echocardiograms every 6 months.

I am told that the reason for this change in her heart could be caused by one of two things. It could have been caused by the Kawasaki Disease Caitlin had in August/September of 2001, because this disease may affect the arteries of the heart or the heart muscle itself. Or the change could be due to the fact that Caitlin had the chemotherapy drug called 'Adriamycin' during her first regimen with chemotherapy --- it's one of those "long-term effects" that usually show up years after the fact. When one of the cardiologists asked Caitlin if she had any comment on this heart issue, Caitlin jokingly replied "it's just another issue on top of many other issues".

We later briefly met with Dr. Arndt, who instructed us to report Caitlin to the hospital at 4:00 PM tomorrow. We were told not very much would happen that first day, although Caitlin would be receiving medications and extreme hydration. Pre-transplant chemo will begin early Sunday morning.

Today, we begin a new calendar. It is now the countdown to transplant day, and today is considered 'Day - 7'. Transplant day is 'Day 0', and the days following will be plus days. These plus days are considered to be the days of Caitlin's new life. They will also begin the countdown to engraftment, when the donors' stem cells begin producing normal blood cells.

And somewhere in the world, Caitlin's donor will also soon begin his own kind of calendar --- a calendar of appointments prior to the actual harvest itself. Since Caitlin's donor elected to have his stem cells collected from his bloodstream (called a 'peripheral blood stem cell harvest'), he will be receiving daily shots of Neupogen (such as Cait receives after chemo). These shots cause blood stem cells to move out of the bone marrow and into the bloodstream. On transplant day, he will go through the apheresis process that Caitlin went through in the collection of her own stem cells. I imagine that this man (our Superman!) has been thinking quite a bit about Caitlin, although he does not know her name. This special man right now only knows that there is a sick child somewhere in the world that is battling cancer for the 2nd time.

Thursday, February 26, 2004 5:16 PM CST

Each doctor seen this week has had their own way of explaining the risks and dangers of transplant, and by far Dr. Arndts' explanation this morning was the most chilling. She stated that the "upcoming treatment and transplant is high risk and dangerous", that "we will keep Caitlin as safe as we possibly can, but there will be unforseen complications", and that "it is a gamble, but you should never second guess your decision for transplant". She went on to say that "you have been told that there is a 90% chance of Caitlin's Lymphoma coming back without transplant. I will tell you that in my heart I know 100% that it would come back without the transplant, and that it would come back and take her. There is no other choice, and you know it".

Dr. Arndt then reviewed the results of the pre-transplant tests Caitlin had had, and brought something new to our attention. Apparently, the echocardiogram and the electrocardiogram Caitlin had shows something that could cause a problem with the upcoming treatment and transplant. The results also indicate that Caitlin still has some sort of heart problem from the Kawasaki Disease she had 2 1/2 years ago, and she needs to be seen by a cardiologist tomorrow morning. Although Dr. Arndt tried not to alarm me and told me that they are just being careful to have "everyone on board that we need", I am very anxious for this appointment tomorrow.

There was also an issue with the results of Caitlin's pulmonary function tests, and in one area the results were worse than before. Dr. Wylam was consulted, and he came up to once again review the results and examine Caitlin. He was reassuring in that he explained normal PFT results would be based on results of a normal 12 year old, and that since Caitlin is the size of a 7 year old he feels her results were good. He even stated that he would "swap lungs with her"!

Dr. Arndt reported that all other systems in Caitlin were good. She also was very happy with Caitlin's weight today of 54.4 pounds! The G-tube feedings are going well, and she has put on 3 pounds in just one week!

Caitlin had lab work done today, but it also included the blood draw needed for research by the National Bone Marrow Registry. We were met by two women who are Transplant Coordinators, and they actually oversaw the blood draw. They then took the one vial that will be coded without Caitlin's name and sent to San Francisco for research. Cait was thanked for participating in such a worthy study, and thanked for helping all others who will receive mismatched unrelated transplants after her.

The clinic appointments this week have been very difficult, made worse by the fact that Dan is not here with us. I cannot help but wear my heart on my sleeve, and with each quickly passing day I become more emotional. Today, Caitlin was the strong one and she comforted me at every tear. She showed tremendous strength again when she said "I am ready for this transplant!!!"

After the appointments, Caitlin and I spent some time at the Apache Mall (her last visit to the mall for a very long time). Wanting to make it a memorable one, we just went shopping. I bought her quite a bit of stuff (oops --- on Dan's credit card!); stuff that a little girl needs to have! Some new clothes, a purse, sandals with heels (her very first heels), a new CD, etc. I told Caitlin that she needed some new Spring outfits and since she couldn't go to the Mall in the Spring, we just had to buy stuff today! We had a lot of fun!

Thank goodness Dan will be here tomorrow. We plan on taking Caitlin bowling tomorrow night (one of her favorite pasttimes), and then out for dinner any place she would like. Dan's brother Tony will be here on Saturday, to help his niece move into the transplant center. I cannot believe this time is upon us.

Tuesday, February 24, 2004 3:34 PM CST

We have spent the better part of the day in the Department of Radiation Oncology. We met with the doctors that will be giving Caitlin her Total Body Irradiation, and they explained the upcoming treatment. In addition to chemotherapy, she will be given radiation twice a day for a period of 4 days. The radiation treatment itself will not hurt; however, the side effects will be felt almost immediately. It was explained that Caitlin will be fatigued, nauseous, will vomit, and will definitely have mouth sores. She will also not want to eat for quite some time.

We were told that if Caitlin had any chance of having children after the chemotherapy from 3 years ago, with radiation treatment her chances of bearing children will be forever gone. It is likely that her thyroid will be damaged, and this will cause additional growth problems for Caitlin. Puberty onset will be very late. Other organs could be damaged --- mainly the liver and the lungs (of particular concern is the fact that Caitlin already has fibrosis of the lungs due to many infections). She will likely develop cataracts as a teenager. The other risks and long term side effects were gone over in detail, and although Caitlin appeared not to be concerned she was in fact quite upset.

During our break in between appointments, Caitlin broke down and cried --- and I certainly didn’t blame her; I’d been crying too. She kept saying “it isn’t fair Mommy” and “I’m not going to be allowed to do anything after this” and then “the doctors aren’t even going to let me go to school for almost a year”. I tried to calm her down and convince her that everything will be alright and that the time will pass quickly, but she could not stop the tears. I then did what any other mother in my shoes would have done at that moment --- offered to take her shopping and buy her anything that she wanted. She stopped crying, and we left the Mayo right away and drove to the store. She wanted a new Bratz doll (although she already owns about 50 of them), and I was happy to oblige. She thanked me for cheering her up, and I was very grateful.

This afternoon Caitlin had an appointment for ‘Bone Marrow measurements’. She was measured from head to toe by 2 physicists, who will later figure out exactly how much radiation to give her and where. We went into the room where she will receive this radiation treatment and although the machinery was impressive, it was a frightening sight. Caitlin was told that I would not be allowed in the room with her, and she was upset --- I have been through every treatment and procedure (except for surgeries) with her up to this point. It has been a bad day all around for this kid.

Monday, February 23, 2004 12:02 AM CST

As planned, Caitlin and I left for Rochester on Friday. It was almost 40 degrees when we left Davenport, and the snow was melting. From the looks of it, the trip would be uneventful. After an hour on the road, however, it began raining. By the time we made it to Waterloo (our halfway mark), it had started to snow. Once past Waterloo, the highway changes to a 2 lane and there are many open fields. Here, I began losing sight of the road due to blowing snow and whiteouts; the road also began to ice up. I saw several accidents, and drove only at 25 miles per hour. Fifty miles outside of Rochester, I gave up. Caitlin and I stayed in a hotel in a little town called Cresco and it was the best $50 I ever spent. We safely arrived in Rochester on Saturday, and Dan arrived that night.

We have finally had our Bone Marrow/Stem Cell transplant talk. It was frightening going in, because Caitlin was not allowed to be present at this talk (always a bad sign). But truly, there were not many surprises for Dan and me. Dr. Khan handled the talk in a very positive and optimistic manner. She reviewed what was about to happen, and spoke of the short and long term complications of chemotherapy, total body irradiation, and infections. She spoke of Graft vs. Host disease. She also said this transplant and the immuno-suppressants Caitlin will be on could actually cause another cancer, or that Caitlin’s cancer could return anyway. Because Caitlin's immune system will be like that of a baby, she may get any childhood disease (like Chicken Pox) again. Cait will be re-immunized for childhood vaccinations at 1 year after transplant. She told us that if this was Caitlin’s first Lymphoma, her chance of surviving the first year after transplant would be 50% - 60%. With this being her second cancer and the fact that she has an immune disease, the odds are much less. Dr. Khan said they never know which child will survive and which one will not. But she is optimistic that Caitlin will do fine, and reminded us that we should stay positive as well. She also reminded us that all on Cait’s team and many others across the country see no other option except transplant for our daughter.

Dr. Khan has had many years experience with transplants, and the Mayo itself has been doing transplants for quite some time. However, it is only since August that they have done Mismatched Unrelated Donor (MUD’s) here. Caitlin’s transplant will be the Mayo’s 4th MUD, and she will also be the Mayo’s 1st transplant with an immune disease. We have signed quite a lengthy document agreeing that Caitlin’s medical record and history pertaining to transplant will be followed for the rest of her life. While this research will not help Caitlin, it will help other children in similar circumstances.

It is expected that Caitlin will remain in the transplant center within the PICU for approximately 2 months. After that, she will need to remain in Rochester for a minimum of 100 days after transplant. There are many rules and regulations pertaining to her release from the PICU, and then her release to home. Dan and I will have much to do when we get to that point.

Caitlin does in fact have Mayo appointments this week, and we will not be able to go home for another visit before transplant. It’s just as well, especially after that last ride up here. Dan will be here early Friday afternoon, and will stay until after the transplant. We will say many prayers from now until then.

Thursday, February 19, 2004 9:00 PM CST

During Caitlin's hospital stay this week, St. Marys Hospital began a new program. Traditional meal service (food served at 7:45 AM, 11:45 AM, and 5:15 PM) has been replaced with a room service meal program. Meals can be ordered at any time between the hours of 7 AM and 7 PM, and ordered items will be delivered freshly prepared within 45 minutes. Breakfast can now be ordered at any time! The menu has many new items, and contains a section specifically for children. Many of these new items are some of Caitlin's favorites ---Gogurt, string cheese, cheese and crackers, juice-in-a-box, etc. After many stays at this hospital and after eating so much of the same food, I am hoping that this new menu will entice Caitlin to eat --- and I think it will work! It's already a plus that Caitlin can order breakfast at 10:00 AM when she is ready to eat!

Caitlin was released from the hospital late Tuesday afternoon. When discharged, she was receiving 40 ml of nutrition per hour via her new gastric tube. It had gone well. After much discussion with the Mayo nutritionists, it was decided that Caitlin should be receiving 1850 calories per day prior to transplant (I had totally misunderstood the plan for feedings, for she is to receive 1250 calories per day via g-tube and hopefully will pick up the other calories throughout the day with normal eating). I had thought this was too much and even questioned if Caitlin needed this much --- she is so small, and only stands 50 inches tall. My heart sunk when I was told the calculations were based on the needs of a "sick child", and that these calories are exactly what she needs. Although there's a lot to be said for a mothers' instincts, I should know better than to ever question an expert. She was released into my care with strict instructions for feedings, and during the next week I am to get her up to 100 ml per hour.

There was quite a fiasco getting set up for needed products. Apparently, there is a wait for portable pumps and the only one available to us was a commercial-sized pump used by hospitals. This type of pump has to be hung on an IV pole and I knew that this pole would not fit in my car --- and that meant I couldn’t bring Caitlin home. With permission for a visit, I can’t tell you how upset we were! American Home Patient later delivered all needed products to our room at Ronald McDonalds’. The nice woman not only hugged me, but told me “I am a Mom too” and “I found you a portable pump in Davenport, IA and told them there is a little girl here in Rochester that needs that pump. Her Mom will be there tomorrow to pick it up.” We were able to come home after all!

We have spent the day packing for Caitlin's stay in the transplant center and have ready arts and crafts, games, posters for her new room, and toys. Because of the worry of exposure, Caitlin was only able to spend time with her best friend Ashley --- and they had a very good time. I do not know if this is our last visit home prior to transplant, as I was just recently told Caitlin might have clinic appointments next week. But we are treating this visit as if it were the last for a while, and if something changes it will be considered a treat.

Her feedings are going fairly well, however last night Caitlin woke up at midnight and pleaded for me to call the Mayo and tell them “I just can’t do it”! She was so full and felt so nauseous. I took her off the pump for the rest of the night, and then re-started it up again very slowly today. With slower feedings, it has gone well. I remember from 3 years ago that it did take a while for her to get used to being feed this way.

Her homecare is now a bit more involved, but I am not overwhelmed by any means. We have been here before. And as always, Caitlin has her chores and so do I. She assists in all aspects of her care.

We will return to Rochester tomorrow --- not that we have anything to do but to keep a room at the Ronald McDonald house you can never stay away more than 2 nights in a week. Dan will come up on Saturday, and we have an appointment on Sunday for the BMT talk. We are counting the days, and want Caitlin to have all the fun she can before move-in time. Dan and I will plan something special for her this weekend.

Caitlin has gotten good news this week from her tutor Michelle. Michelle said that Adams School has agreed to let Caitlin graduate to 6th grade in the Fall. Cait is so happy to go on with her classmates, and she said that "my tutoring and hard work at school was worth it!!!" On the side, Michelle told me that an IEP (Individualized Education Plan) such as Caitlin is under holds tremendous power --- and that the school has the responsibility of educating Caitlin no matter what. Although we keep no secrets from her, this one we will keep to ourselves. She is entitled to the victory.

Monday, February 16, 2004 12:26 AM CST

Caitlin is doing better, and with each passing day she makes a bit more progress. She has eating priviledges now, and although her appetite isn't what it should be she tries. She is still taking pain medications, but she has been weaned off the Morphine. Her G-tube was used this morning for medications otherwise taken orally, and feedings begin later on today. The plan is to feed her 10 hours at night with 50% of her needed caloric intake --- until more feedings are needed. If she tolerates the feedings, she will be released from the hospital this Wednesday. I am in the process of re-training in regards to usage and maintenance of the tube, and will take shipment of products needed this week.

Dr. Arndt said there is no reason not to take Caitlin home once or twice before our move-in to the transplant center in 2 weeks, now that goals have been reached. The team is concerned about exposure to anything harmful, however, now that the transplant is near. I had bought Caitlin a craft kit, which had small flower pots to decorate and paint and then fill with potting soil and plant seeds in. Dr. Arndt stopped the project; apparently the soil could contain fungi spores that would be harmful to Caitlin's lungs. Anyway, because of the exposure she will not be going to school when we go home.

Caitlin is so close to transplant now. She has come so far and has made so much progress. Yes, right now she is hurting from her recent surgery. But she will be ready come March 5th. Dan and I agree that the timing of the transplant will be perfect.

For months now, Caitlin's team has had weekly meetings on her upcoming transplant. What is to come will be the culmination of a lot of planning, research, and hard work. We are forever indebted to the Mayo Clinic and the geniuses behind it. Caitlin is in such good hands. Shakila Khan is now in charge of Caitlin, as she is considered an expert in the field of Bone Marrow transplants. I cannot look at this woman now without crying.

I have said in the past that I have not been researching any information. Now I find myself crazy with library visits. These transplants are so frightening, and carry so many risks of failure. Some effects may not even show up for years! When I report another frightening fact, Dan just asks me "What other option do we have?" I guess there's a lot to be said for blind faith.

Caitlin's Aunt Sue, Aunt Rae, and cousin Jackie came up for a visit this weekend. It was wonderful, and Caitlin was delighted! They brought Caitlin a Valentine's present --- a frog that sings "Love me Tender" while its' lips move. Caitlin showed all of her nurses and doctors her singing frog, and we had a lot of laughs!!! What a great weekend!

Friday, February 13, 2004 1:26 PM CST

It has been a busy week. With great scheduling by the Mayo and quite a bit of running by us, the majority of appointments that needed to be accomplished are done. And a few transfusions were thrown in as well! The tests and consults were both time-consuming and tiring, with the worst for Caitlin being the Renal Function and Opthamology tests. She remained a trooper, however, and kept a smile on her face and maintained her positive attitude throughout.

We ran into many friends at the clinic this week --- friends both past and present. It was amazing to see so many people we know up here! Dan said "It's a really sad day when you run into more people you know in Rochester than you do in Davenport!" He's got a point!

Caitlin has been showered with attention, and doctors seem to be going out of their way to speak with her. She has always been loved up here, but this is something different. She seems to now have some sort of 'celebrity status' here --- and I am sure this has to do with the upcoming transplant.

It was decided Wednesday that Caitlin's G-tube placement should not be put off any longer. Surgery was performed by Dr. Moir Thursday, and thankfully it went well. She will be recovering in the hospital for the next 3 - 5 days.

I am happy to say that Dan was able to be with us for Caitlin's surgery. With little notice, he was on his way to Rochester. He will stay with us for the rest of the week. Caitlin and I were relieved to have him here with us for surgery. He even had the honor this time of dressing in the funny blue suit and walking Cait into the procedure room!

Dr. Moir said that he had to do "more work there than I thought". He had promised Caitlin to try to use her original scars from her previous G-tube and he did try; it just did not work out. Caitlin is in quite a bit of pain, and the Morphine drip and Fetanyl don't seem to be working well enough. She weeps ever so softly, for a good cry would just hurt too much. She cries that "this pain is worse than my cancer". Our hearts break for her, and we weep too. But we also know that this G-tube will help her tremendously in the weeks and months to come. So we pray she recovers from this quickly, and that tomorrow will be a better day.

Monday, February 9, 2004 12:30 AM CST

Yesterday we attended the 'Kidfest' fundraiser for our Ronald McDonald house. It was a wonderful event --- full of games and activities for children. Caitlin won many prizes, enjoyed the magic show, and even built a bird feeder! There was a tremendous showing of support from the Rochester community and I'm sure this event was a huge success. There were speeches about the need to support the RM house and the families that use it. Although this is our third stay at the house, it is still hard to believe that speeches such as these are meant to help families such as mine.

If I had been asked a few years ago about the possibility of living in a RM house, I may have balked at the thought. But now I know, all too well, how life can change with just a blink of an eye. And I also know how quickly priorities and life's path can change. For us now, our RM room is our refuge --- our very special, safe place. We are very appreciative to all who help make this possible, and to the very kind people who run this house.

Caitlin is now on day 12 after chemotherapy, and she remains well. How lucky we are to still be escaping hospitalization this time! She has admitted to being scared about her upcoming transplant, and although I try to soothe her fears she knows the risks just as Dan and I do. We have always been honest with her, and have never kept important facts about her condition from her. But what we don't tell her is how very frightened we are. How can you tell a child that she has no other option to live --- other than risk the odds of a transplant?

I have finished reading my book on bone marrow transplants, and quite a few facts have startled me. But if there's one thing I've learned in seeing Caitlin through her various illnesses, each case will always be different from the classic version. What you may worry about the most may never come to be. So I will continue to remind myself to breathe, and as my Mom daily reminds me "take one day at a time".

Thank you all for your continued words of encouragement, love, support, and prayers. We need these prayers more than ever now!

Saturday, February 7, 2004 6:02 PM CST

Upon Caitlin’s return to the clinic Friday, we were given great news. The first donor chosen by Caitlin’s medical team has agreed, and the date of March 5th has been selected for the transplant. How fortunate it is that Caitlin’s new stem cells will come from the very best donor! Everything is falling into place, and although the future is uncertain our hopes remain high!

I was given a two-month calendar of events for Caitlin. Beginning Monday, she will have ‘pre-transplant evaluations’ of heart, eyes, lungs, teeth and gums, etc. --- a baseline is needed in all areas to see if anything changes after the transplant. She will also have a psychiatric evaluation, and will meet with a soon-to-be-added member of her team --- the radiation specialist. Other upcoming events are surgery for G-tube placement on 2/20; the promised “Bone Marrow talk” on 2/22; and move in to the Pediatric Intensive Care Unit’s Transplant Center on 2/28.

We now know the chemo agents she will be receiving prior to transplant: Methotrexate, Cytoxan, FK506, Campath, and something called TBI which I believe is the radiation treatments. These agents will kill Caitlin’s bone marrow cells so they will not fight off the new donated cells. I was also given a book on BMT’s, and told that although we know quite a bit of medical terminology a new language is used with transplants. I have learned that only 2,000 children in the U.S. per year receive BMT’s --- a statistic that scares me to death. I wonder if I really want to know more.

Caitlin’s counts have begun to drop, and this morning she received blood at the St. Mary’s Pediatric Infusion Center. This was a treat in itself! For almost two years now she has been receiving IVIG infusions at our local hospital, and she has always been the only pediatric patient infused there! This morning, she was among friends!

She has still not had a fever, and if it’s to come it will happen this weekend. I am keeping a watchful eye, and am continually bothering her when I feel her forehead. Because she only had the three day regimen of chemotherapy this time, I am told she may not end up in the hospital when her counts drop. It would be wonderful if her upcoming appointments could be accomplished on an outpatient basis!

Because we were able to spend quite a bit of the week together, Dan will not be coming up to Rochester this weekend. He will be missed, but I am happy for him to be taking it easy. This is a man that is always on the go! The more we thought of it, the more we realized that the fuel pump going out in Dan’s truck when and where it did was in fact a blessing. He could have been on that lonely stretch of road between Rochester and Waterloo where houses are few and far between!

We are sad to be missing the gala event and fundraiser for our local chapter of the Make a Wish Foundation tonight. We never wanted to miss this function, as we will be forever indebted to this kind people! Caitlin’s Make a Wish was to Disneyworld in 2001; a vacation that will never be forgotten! For the past two years, Caitlin has been one of the stars at this event. I am sure that this evening she will be mentioned, and that all will be remembering her in their prayers.

Tuesday, February 3, 2004 9:46 PM CST

As promised, Caitlin was released from the hospital Sunday after her three days of chemotherapy. This hospitalization was uneventful, other than Caitlin now needing oral phosphate supplements. She is feeling extremely well.

Early Monday morning we awoke to the blaring sound of the fire alarm at the Ronald McDonald house, and we all had to quickly evacuate our rooms. Within minutes, the house was full of firemen. Although Caitlin was thrilled to see these heroes in action, for the adults it was quite a frightening scene. Luckily, there was no fire; several water pipes had burst in the new units on the third floor, and the water quickly reached the lower levels. Many units were damaged, and several families had to be moved. Ours was one of the few units that had no damage. Our hearts broke for those affected, yet we were grateful our room was intact. We thought it was our lucky day!

We had a tremendous snowstorm in Rochester, and it had snowed for several days. When we finally ventured out in the cold, we found that both of our vehicles were plowed in. In brushing off his truck, Dan noticed that his side mirror was gone (we guess that a snowplow took it off). When he finally got his truck 'unstuck', the vehicle stalled and would not restart. So much for our lucky day. We had to have his truck towed to a repair shop, and we now know that the fuel pump went out.

In an unlikely turn of events, Caitlin and I are home and Dan is still in Rochester. We did not want to leave him today, and I suggested that he take my car home and I would worry about his truck. He would not hear of it! He insisted that we go home as planned because it was very important to Caitlin. He is such a nice man! We had hoped his truck would be repaired late today and that he would be home late this evening, but it just did not work out. His truck will not be ready until tomorrow!

Early this morning, Caitlin had an appointment with Dr. Linder (the geneticist). She is a wonderful, extremely intelligent woman --- but she is also hard to understand. This is the one part of Caitlin’s condition that I, at times, have a hard time following. Dr. Linder did not have any new information for us, she just reviewed the results from the specialty tests from outside labs. I had previously received a copy of her report in the mail, and I quote her written words:

"We have received results of the mutation analysis on cartilage-hair hypoplasia from the Gene DX laboratory in Maryland. No mutations were identified in Caitlin on sequence analysis. Analysis of the RMRP gene in one large study in Finland in both Finnish and non-Finnish patients was able to identify mutations in all cases. Therefore, this normal DNA sequence in Caitlin makes it extremely unlikely that this gene is contributing to or causing her current clinical problems.

From Johns Hopkins University, we received results of DNA sequence analysis of the ATM gene. No evidence of a sequence variation was identified in the ATM gene. This sequence analysis has a 95%