Day 340

       Yesterday when I said Katie is doing "fine."  I guess I need to qualify that... Katie is doing fine in that she is acting normal and she doesn't have a fever.  Really though, Katie is not fine.  
     The bumps keep coming.  The old bumps are scabbing over, but there are new bumps every day, mostly covering her arms and legs.  Her hands and feet continue to peel.  We need this to resolve!  Katie needs to resume her treatments!  The problem is, if we resume treatments while she has this virus, then we risk her levels plummeting and serious complications resulting - in addition to the possibility of her bone marrow being suppressed.  And if we do not resume her treatments we obviously run the risk of her Leukemia relapsing.
     The nurse from the clinic is going to call me tomorrow to see if Katie's bumps are gone - and unless a miracle happens, her bumps will not be gone.  If her bumps are still active and present then we will go to plan B.  I don't know what plan B is!!  I don't think they knew what plan B would be!  I woke up this morning with this thought in my head, "they are going to have us make the decision - to resume Katie's treatments or to wait."  What a horrible decision to have to make!  Either way our daughter is at risk!!! - I don't know what they will actually say or do - and I am not sure what we will say or do.
     Scott and I are praying and fasting today for Divine Intervention and guidance.  We ask for your prayers in Katie's and our behalf!  Katie has been sick with this for 3 weeks (since the night of September 24th).  She has been off of her treatments for almost 2 weeks now.  Katie needs help and we need your prayers!  Please.
     “The Lord has said, ‘Be thou humble; and the Lord thy God shall lead thee by the hand, and give thee answer to thy prayers’ (D&C 112:10).
     "What a tremendous promise is given in this statement.  If we are without conceit and pride and arrogance, if we are humble and obedient, then the Lord will lead us by the hand and answer our prayers.  What greater thing could we ask for?  There is nothing to compare with this."

Gordon B. Hinckley, “A Prophet’s Counsel and Prayer for Youth,” Ensign, Jan. 2001, 10

Day 339

      Yesterday was a sobering day for us, as the full realization of what is happening (and could happen) sunk in.  It was a day that left my husband and I in tears.  Nothing new has developed with Katie - She is doing fine.  It's just the full impact of this finally hit us.  As I said, the Infectious Disease Doctor isn't sure, but he doesn't think this is the Chicken Pox, and never has been.  (Even though we were told it had been confirmed by an Infectious Disease Doctor, and we were told it couldn't possibly be anything else).  Now we are being told it may be a virus that causes a lot of different type of diseases ranging for Hand, Foot & Mouth Disease to Meningitis.  His best guess is this is Hand, Foot & Mouth Disease.  (Hand, Foot & Mouth: rash on bottom of feet, palms of hands and around mouth.  Sore throat, nausea, fever).  Katie never had a rash on the palms of her hands, feet, or around her mouth, so you wouldn't think it was that.  However, as he said, Katie is not your typical child because she has Leukemia and has a compromised immune system, so Katie will not have the typical reaction (to anything) - Hence Katie's rash/sores/blisters all over her body.  The ID doctor thinks what Katie has is linked to this virus because on 9/22 Conner got a fever and on 9/23 he had white sores in the back of his throat (Conner was treated for strep, even though he had tested negative for strep).  On 9/25 Katie woke up with a fever and a sore throat.  I took her to the clinic and she also tested negative for strep, but she was treated for strep as well.  Conner never got a rash, but not every kid does, with Hand, Foot & Mouth.  Katie got one sore in her mouth, in the front that looked like a cancer sore.  Because of all this, the ID doctor's conclusion is that it is most likely not Chicken Pox, but possibly the virus that causes Hand, Foot & Mouth (or a lot of other diseases).   
     We don't know anything for sure, because the proper tests weren't run at the proper time.  More tests are being ran now, but they may not be conclusive.  One test will take 2 weeks to get results back.  So the doctors are just shooting in the dark.  We are currently treating Katie with an anti-viral (the right one this time!) just in case it is Chicken Pox.  If it is the other???  I don't really have an answer for that - as far as I know there isn't a treatment for that - just a wait and see.  Currently Katie has these bumps all over her that are in various stages from new to healing.  They aren't the big red, angry sores, like before.  They are smaller and they have a whiteness to them.  Katie's hands and feet are also peeling (a lot). 
     The sobering part for us, is that Katie has not gotten over this.  Whether this is Chicken Pox or Hand,Foot, Mouth, a normal child would have been well by now.  Is it even either of those?  Or something else?  With a virus, serious complications can arise, at any time.  Complications like Meningitis!  Not to mention that Katie has been off her treatments for so long - and if this "virus" doesn't resolve she will be off her treatments even longer.  Either way, we have to worry about her bone marrow being suppressed.  It is all very frightening!  We feel so helpless...and frustrated!
     I know I "threw a fit" about not going on our trip, but at that time we believed Katie had Chicken Pox, and we believed she was at the end of it.  We were frustrated with the doctors.  This trip was kind of a mile marker for us.  Katie's port is out, it had been almost one year since this had started.  It has been hard for all of us, and this trip was meant to be a "relief" for all of us.  I was so excited to see Conner and Katie's (and Nathan's) excitement at the beach and at Disneyland....It was "a bitter disappointment."  At the time, we sincerely believed she was done and healing from the Chicken Pox.  We thought the doctor was reacting after the fact, because they did not react "to" the fact in the beginning.  --Anyway, none of that matters now.  We are glad we didn't go.  If we had gone, we would have always wondered if she got the new bumps because we pushed her too fast, too soon.  The trip is inconsequential!  Katie is all that matters!  Our sweet little Katie, who out of the blue, told me a few weeks ago, "You don't want me to go to Heaven yet, do you mommy?"  I replied, "No, Katie, I do not want you to go to Heaven yet."  Katie: "Because you would miss me too much, wouldn't you?"  Me: "Yes, Katie, I would miss you too much."  Katie: "But we are all going to go to Heaven someday, aren't we mommy?"  Me: "Yes, Katie, we are all going to go to Heaven some day."  Katie: "Then Jesus will be happy to see me and He will hug me."  Me: "Yes, Katie, He will."  Then she hugged me and went back to playing.  I was left wondering where in the world that came from!
     We are not panicked.  Katie is doing fine.  We think everything will be fine.  Yet...the fear is there, and it is real.  We know our precious, sweet girl is in the hands of God.  We trust in Him and in His will for her.  We are glad we have a knowledge of a loving Heavenly Father.  
     “Faith is not a theological platitude. It is a fact of life. Faith can become the very wellspring of purposeful living. There is no more compelling motivation to worthwhile endeavor than the knowledge that we are children of God, the Creator of the universe, our all-wise Heavenly Father! God expects us to do something with our lives, and he will give us help when help is sought.” Gordon B. Hinckley, "With All Thy Getting Get Understanding," Ensign, Aug. 1988, 2

Day 338

      You would think Katie was the first child with Leukemia to get an infectious disease.  Apparently the "positive confirmation" on the Chicken Pox is now not so positive - meaning we/they are not sure what Katie has.  It is a virus of some sort and it may be Chicken Pox, or it may be something else.  I don't have the energy or desire to go into all the details of all that has gone wrong - or mismanaged - regarding Katie's health care since she developed a fever and rash, 2-3 weeks ago.  I will just say that yesterday we got A LOT of apologies for how things have gone.  I was told there will be a change in policy, procedures, and protocol.  They say they are "embarrassed" about how things have gone.  "Everyone is sorry."  However, like I told the doctor yesterday, I appreciate all that, and it is necessary to change policies/procedures, but that does not make things right for my daughter.  My daughter has been put at risk and this has impacted us on multiple levels.  We are fortunate Katie hasn't had anything more serious develop - but again, that is just a blessing - it not because of what the doctors have done to manage her care. 
     Katie should have been seen by an Infectious Disease Doctor on day one (or any day there after), not two to three weeks into this.  (We didn't even know there was such a thing as an Infectious Doctor that could see Katie - but they did!)  The doctor at the clinic performed the wrong test, and now it may be too late to ever know what Katie has.  Katie was prescribed the wrong medication, because the doctors at the clinic were not "informed" (and they were not informed because they did not bring in the Infectious Disease Doctor).  Katie was needlessly hospitalized, because they were not more proactive.  And on and on.... 
     They have done so many things wrong, yet we are left to "pay" for their mistakes - paying for the hospital stay - paying for (and Katie taking) the wrong medication for a week (and even through an IV at the hospital).  More importantly, we are "paying" for it, by them putting Katie at risk!  Katie will be off of her chemo for a minimum of two weeks before this is all said and done (and we hope and pray it will not be longer)!  If the doctors had done what they should have done, Katie would not have needed to be off of her treatments for so long.  And I was told it is "imperative" we get her back on treatments as soon as possible.  (When Katie is on chemo/steroids, we pray that she will be protected from the negative effects.  Now that Katie is not able to get her treatments, we are praying she will be protected from relapsing).  They have put my daughter at risk by their mismanagement!  It is frightening that Katie's Leukemia treatments are on hold - I never thought I would want chemo or steroids so badly!  The other way they have put Katie at risk is that she still has something going on with her - no one is sure yet what it is.  Katie has some type of virus.  This could cause her immune system and levels to plummet and that could result in her bone marrow being suppressed. 
     So, we are no where near being in the clear here.  Katie is doing fine, she is now on the right preventative medication, but we are monitoring her and waiting to see what happens.  If her spots go away, she will resume treatments on Tuesday.  If her spots don't go away - then we will have to come up with an alternative plan - which no one knows what that would be yet.  Our doctor is still out of the country - so we will be going to see the head of the Oncology department on Tuesday.  We are told to expect many more apologies...and that is all fine and good, but that still can't fix what has happened, and that my daughter was needlessly put at risk... It will however, hopefully, help others in the future so they will not have to go through what we have gone through.  Like I said in the beginning - the way this went, you would think Katie was the first child to go through something like this.  It is hard to understand and comprehend! 
     I am glad Katie has done as well as she has through all of this.  Hopefully we are on the upswing of things, but it could easily still go the other way.  Whatever it is, I am told Katie is contagious, so we are stuck at home.  I don't know how many readers we have left, but for any out there, we could sure use some extra prayers for Katie at this time!

     President Monson, on the subject of patience, has said: “Life is full of difficulties, some minor and others of a more serious nature. There seems to be an unending supply of challenges for one and all. Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.”

“Patience, a Heavenly Virtue,” Ensign, Sept. 2002, 2

    

Day 336

Katie and I spent today in the ER.  Katie has been admitted to the hospital.  We seem to be starting round two of the Chicken Pox.   This definitely isn't Disneyland!  :)

Day 331 - Part 2

       Well, there is one thing worse than going to Disneyland on steroids..... Not going to Disneyland at all!...  We have had to cancel our trip to California next week.  After all my planning, and scheduling, and anticipation, we are not going - it was all for nothing - except disappointment.  I even had all of our bags packed for our trip (I did all the laundry and packing yesterday - I like to plan ahead and be ready).  We have been planning this trip since summer - we had to cancel our summer vacation because Katie wasn't able to get her port out - so we planned this trip for now.  It was perfect timing - Nathan was going to be out of school and it is his 16th birthday (he loves the beach), Scott already had 4 days off of work this next week, Katie was going to be in between treatments and not on steroids, it was still warm enough in California to go to the beach, I had everything planned down to the last detail, it was going to be great!....  Katie is a few months into Maintenance... everything was supposed to be pretty predictable.  I have saved and put money aside for this trip, which is not easy to do, because of all our medical bills.  We all needed something to look forward to - and for months this has been the "prize" in front of us.  I have talked it up to the kids.  They were so excited about it.  I was so excited about it.  I spent days trying to get the best price, best days, best hotels and making reservations. 
     This whole week, I was told by various people at the clinic, it would be fine for us to go on our trip, and now today we are told we can not go.  It is a bitter disappointment!  Scott and I even considered ignoring the doctor and just going anyway.  But this is our daughter's life - and no trip is worth any risk - it is better to be safe than sorry.  But it is such a let down!  I already had all of our bags packed for goodness sake!!!  We were on the count down.  FRUSTRATING!  DISAPPOINTING!  MADDENING!  Our doctor is still out of town - I wonder if things would have gone differently if she were here - I think they would have!  Scott and I did not agree with everything the doctor said and did today.  It is so ludicrous.  We get there today and they treat us like we have the black plague - fine, I understand that - Chicken Pox is very dangerous to kids with low immune systems.  BUT where was the care and concern for my daughter this whole first week of her having Chicken Pox!? 
     I went into it all with the doctor today and all she could say was, "Yes, I agree... I agree... I agree... Your daughter's care was not managed well." The doctor went on to say we are "fortunate Katie is doing so well, and that nothing more serious resulted."  I agreed with her, but told her that was exactly my point - It is just fortunate, a blessing, that nothing more serious resulted.  I explained to her that now that I have researched Leukemia/Chicken Pox, I realize just how serious this could have been for Katie.  The doctors I have been talking with this past week, should have known the dangers, and they should have been more proactive with Katie's care - and yet they did not provide the care for her they should have to ensure Katie's health and safety through this.  Once again, the only thing the doctor said was, "I can not speak for the other doctors - but I agree, Katie's care has not been managed well".  AGGRAVATING!
     Long story short, the doctor said Katie is still contagious.  Katie did not get her chemo treatment today and she will not start on her steroids.  In fact, we are to stop all of Katie's chemo medication for the next week (a little after the fact I think -  Katie has had Chicken Pox for well over a week now - and NOW they tell us to stop the chemo!?)  I do agree it is a good idea to hold off on the chemo, but shouldn't they have stopped it a week ago when Katie was really sick?  Anyway, it is what it is... So, instead of Katie playing at the beach next Friday (in her cute Minnie Mouse ears hat), she will be here, getting her chemo treatments.  What a bummer!!!  I am worn down and wiped out - we all are. 
     However, in an effort to look for something to be "glad" about, we are so very very grateful for how blessed we have been through this whole thing.  Katie only got a mild case of Chicken Pox and that was a great blessing!  None of her sores got infected and that was another great blessing!  And nothing went seriously wrong, that could have gone wrong.  Katie is alive, she is recovering well, she wasn't hospitalized, and she is fine.  I am glad and grateful for all those blessings.

Day 331

     I feel like Katie getting Chicken Pox has been a reminder that I need to be more proactive, I have to be in charge of my daughter's health care and not just leave it up to the doctors.  I need to research things on my own and be very vigilant about her health care. 
     After doing some research, I have come to realize how blessed we are that Katie only had a mild case of Chicken Pox.  If she had been on steroids in the past couple of weeks (verses being off steroids for 3 weeks) she most likely would have had a severe case.  Chicken Pox and steroids are not a good mix - and can lead to severe complications and even possibly death!  I am angry that the on-call doctor I spoke to on Saturday morning did not even ask me about Katie's steroids, that she did not have me bring Katie to the hospital, and that more was not done to ensure my daughter was okay.  The doctor that day - and even the doctors on Monday (when I called the clinic acted like Katie was just another kid with Chicken Pox, BUT that is not the case.  Katie has Leukemia and her immune system is not like other kids and Chicken Pox could have been life threatening for her. 
     Like I said, it wasn't until Tuesday that the doctors started reacting to this (they were short staffed and there wasn't a Leukemia doctor working until Tuesday).  Even then, we feel like they were more concerned about not infecting the other children, than they were about Katie, because they did not want us to bring her in.  In a way I can understand that, but in a way I also resent that.  I am angry about how things were handled by them.  I am sad and frustrated Katie got the Chicken Pox - period.  I am sad and frustrated Katie has to take (more) medication twice a day, for a long period of time, because she got Chicken Pox.  I am scared, sad, and frustrated that she could easily get Chicken Pox again or Shingles.  It is just one more fear and worry. 
     We think we found the origin of the Chicken Pox.  I am taking turns with other mom's teaching Joy School.  Katie is one of 7 children.  I was encouraged by our doctor to involve her in a preschool program.  Two weeks ago, one of the children was immunized for Chicken Pox, and came to Joy School the next day.  This is not anyone's fault - the mother even asked her Pediatrician if it was okay for her child to be around Katie and she was told it was okay.  Our doctors at PCH would have told us the same thing.  However, it takes two weeks for Chicken Pox to "appear" - and the timing is too exact for it to be a coincidence or anything else.  Plus no one else we know had Chicken Pox.  It is rare for a child to contract Chicken Pox from another child getting immunized.  The theory on this has swung from one pendulum to the other on this topic - the doctors used to not let siblings of patients get immunized for fear of exposing the child with Leukemia - now they say it is okay to be around immunized kids.  Unfortunately, Katie is proof that a child with a low immune system can get Chicken Pox from a child who received the vaccination.  (Again, we do not blame anyone for this - there is no way any of us could have known to do anything any differently).
      I am still worried about Katie.  She threw up last night and was very shaky this morning.  I am scared, sad, and frustrated!!!  Katie goes to the clinic today for a chemo treatment and antibiotics - and to start her 5 days of steroids.  I believe the risk of steroids mixed with the Pox is no longer an issue, as Katie is past the worst of it.  However, I will be sharing my fears, concerns, and frustrations with the doctor.  (Unfortunately, our doctor is still out of the country).  I am going to just say it one more time... I am frustrated!  I wish things were different.  I wish Katie didn't have Leukemia...didn't get Chicken Pox..... 
     But back to reality, back to dealing with it, and back to looking for the positive.  I know I am reacting to what could have happened and not what actually happened (but for Scott and I, this is a terrible reminder of how vulnerable our daughter is, and of all the things that could happen, and how many things can be life threatening for her other than just the Leukemia).  However, we do recognize the great blessing we were given this past week, and that things were not worse than they were.  I am glad that if Katie were to get Chicken Pox, that she got them 3 weeks after her last steroid treatment and not at any other time.  I am glad that she only had a mild case.  I am glad she is doing better.  I am glad she is responding to her chemo treatments.  I am glad her chemo treatments and other medications are available.  I am glad she is alive.  I am glad she is who she is.  I am glad to be her mom. 

Day 328

      Well it was confirmed by the doctors today...Katie has chicken pox.  We are a bit frustrated because we called the hospital on Saturday morning and the doctor on call acted like it was no big deal - and even yesterday when I called it clinic they acted like it is was only kind of a big deal - now today, the team of doctors got together and decided it is a dig deal.  (Our regular doctor is out of the country right now).  Today they cancelled her spinal tap (that she was getting tomorrow) and postponed it for a month.  They rescheduled us to come in on Friday instead of tomorrow - at which time, she will get her "regular" dose of chemo for the month and her IV antibiotics.  The bummer is that because of this delay, Katie will now be on steroids at Disneyland.  "Roid Rage" and Disneyland will not go together very well!  I had it all planned out very carefully (months in advance) just so Katie would get her treatments and steroids in advance of Fall Break and prior to our California trip/Disneyland.  But, I couldn't have planned for chicken pox!!!
     That isn't the worst of it though, that is just bad timing, the worst part is and I quote (our nurse), "Katie is not a normal kid - because she is going through chemo she doesn't have the immune system of a normal kid."  Now that Katie has been "exposed" she is susceptible to getting chicken pox again or getting shingles.  So the doctors have decided put her on a medication twice a day for the next year and few months until Katie is through with her treatments (Jan 2014).  The medication is to try and help prevent any additional outbreaks of chicken pox or shingles - it isn't a guarantee, just a way to help try and prevent outbreaks.  Scott and I understand the need for this, but it is very upsetting.  We hate the thought of adding another medication to her long list (and mix) of medications.  It is worrisome to think about the lasting effects of taking so many medications.   - Plus Katie always has a rash now, some days worse than others, now I am going to worry all the time if it is just a rash  - or shingles - or chicken pox coming back.  And yes, I know, worrying won't help anything, but it is hard not to worry!
     On the "glad" thought for the day... Scott's aunt gave us a puppy on Sunday.  It just happened to be the kind of puppy we had talked about wanting - she is a Morky - a mix of Maltese and Yorkie.  She is a tiny ball of fluff - she is white with a little bit of apricot color to her.  Conner has insisted her name is "Peaches" and he will not let us name her anything else.  So, yesterday we gave up trying to come up with another name.  Peaches it is.  She has already brought much joy into our home - a type of joy that has been missing since our dog Cozy passed away about 10 months ago.  I wasn't really ready for another dog - if I had my way, we wouldn't have ever gotten another one (it was too hard loosing Cozy) - but Scott felt the kids needed a dog.  And she is a sweet little thing - we are all in love with her already - I am probably the most attached!
      Dieter F. Uchtdorf said: "Patience—the ability to put our desires on hold for a time—is a precious and rare virtue. We want what we want, and we want it now. Therefore, the very idea of patience may seem unpleasant and, at times, bitter...Nevertheless, without patience, we cannot please God; we cannot become perfect."

    "Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"

("Continue in Patience," Ensign, May 2010, 57)