Non Medical Day–Wahoo!! August 6, 2010

It’s Friday and we made it through 4 days of chemo this week!  Rinse and repeat for next week:)   McKinley is doing fantastic.  Right now she is sitting in the floor playing with silly bands and a baby doll and chatting in her little language.   Such a sweet sound to my ears.  Her appetite has been a little bit better this go around for the ARAC (chemo) that she is getting this week, which we are thankful for. 

Her ANC (immunity #) is up right now and will start going down probably early next week.  Because it is up…..we are able to go to Ridgway’s Maintenance party tonight!!!  Way to go Ridg!!!  AND the plan (we hold loosely to that word now) on attending a going away party tomorrow night AND church on Sunday!  We are still SUPER careful and feel like we can attend since we can go outside and not be partying in a house…..

So, yesterday was a day when I was feeling the love.  Our friends, Dawn and Elizabeth, arranged to have our house cleaned.  So, when we got back from clinic yesterday….sparkling clean!  What an amazing feeling….thank YOU so much gals!  Then I was pondering the “what’s for dinner”.   I opened the freezer door and remembered that my friend, Kim J., had made a couple of frozen items for us.  So, I popped that out and we had chicken parmesan for dinner–in just a manner of a few prep minutes!  Thank you for serving us….yesterday was timely, even if you didn’t know it!

One thing that God has been teaching me lately is that I need to “kick my feet up”  in lieu of stressing, which is my bent.  This is quite the challenge for me.  I’m realizing that this affects much of my life, including my prayer life or my talks with God, if you will.  I find myself “demanding” and asking so much more when I’m focused on the situation instead of God–Himself.  Don’t misread this….we are to plead and ask God for help for: 

“God is our refuge and strength, an ever-present help in trouble.”  Psalm 46:1  ^“And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.”  Ephesians 6:18

I am just trying to, as I said before, kick my feet up and join Him in this process instead.  Pleading and praying  along the way — but trying to “be awake” in order to be used in the moments.  Maybe that is the “alert” part in the Ephesians verse….

Please continue to join us in praying and rejoicing!!!

Prayer

No fevers or infections=no extra hospital stays….

Continued appetite and good caloric intake

In general no side effects from her treatment

Us to be “awake” to God’s leading in this journey

Divine healing

All of our other friends in the battle:  Allison, Blake, Bella, Max, Jamison, Ridgway & Tilly

Yay God

Her counts are high enough for us to be with friends a little this weekend!

She is tolerating her treatment so fantastically–with little/no side effects!

We are home–medical treatment free until Sunday!!!

Monday, really? Ok, now it is Tuesday…. July 27, 2010

Makayla playing with shaving cream....yuck, but fun for her!!!

YEAH GOD….RIDGWAY HAS VINCRISTINE THIS MORNING AND THEN HE IS IN MAINTENANCE……Way to go Ridg!!! 

I started this blog yesterday morning and am just now getting back to it.  It is really difficult to focus and sit down for any length of time in the hospital.  Quiet time is golden here. 

McKinley is still sleeping and it is 9:30am.  I am sure they will be in to wake her in a bit.  She has been sleeping better but not enough to sleep through 12am and 4am vitals.  Makayla is going to VBS this week and seems to have really loved her first day.  My parents are back in town helping take care of and transport Makayla this week.  Makayla really enjoyed playing at home yesterday instead of being in the hospital.  I still went home for the night to spend some time with her and get a decent night sleep.  I have to leave the house at 6:15am in order to get to the hospital in time for Scott to get ready for work.  It is a major juggling act when we are here, but it works out.  I know it is hard on Scott to be here at the hospital and then go to work.  He continues to amaze me….I love you, Scott!

Her ANC has gone from 10, 20, 50 and now today it is 60.  Still not 200:( but it is climbing and on its way up.  Just not on mommas time clock.  She is doing well and playing.  They just continue her on the Zosyn (antibiotic) until count recovery.  So, we will be here for a few more days….not sure how long.

So, Scott and I have had several conversations about how to balance praying/believing and then the being disappointed when the prayer is not answered they way we prayed and believed it would be answered.  I know it isn’t a formula and God isn’t a genie.  This fever/infection/count recovery is a spiritual/emotional roller coaster for me.  I pray specifically for her counts to be 200, believing and knowing that God has the power to produce that many healthy cells.  The past four days….they are low, but climbing.  So, the question is how do I continue to keep hoping in Him when my prayers are not answered in the way or timing in which I expected? 

To be honest, I do not know that there is an answer, so I go back to what I do know.  God is good (IChronic 16:34), He loves us (John 3:16), He is faithful (Deuter 32:4), He is all-powerful (Exodus 15:6) , He is amazing (Matt 8:27), He is our Creator (Psalm 33:1), He is our Provider (Psalm 34:1), nothing is too difficult for Him (Jer 32:17), He is directing our steps (Proverbs 20:24).

So, when these daily disappointments come, I will probably cry, then regroup, refocus and PRAY….PLEAD, again.     Yesterday my prayer was this:  Since we are here (insert your situation here) use us, please. 

But please continue to pray for count recovery!!

PS Thank you to Dawn for the Kroger gift cards!!!!!

Quick update Saturday July 24, 2010

McKinley has been fever free for 38 hours now….Yeah God!  This means we can get out of the room and she was able to get off of one antibiotic and day fluids.  She is still on night time fluids and one antibiotic until count recovery (her immunity numbers increase).  Her numbers were 350 yesterday and 10 today.  The doctor told us it could take up to 7 days for her counts to recover…..depends on where her body is at with the chemo from two weeks ago—it is really hard on her numbers.  So, the wait begins.

She is feeling better, but her appetite is not up to standard and she has been given some oxicodine for pain she seemed to have.  It appears that the virus was flu like in body aches and perhaps headaches and low grade fever.  She is also still pretty fussy, but I would be too.  She slept a little better last night, but it is impossible to get a good night sleep in the hospital. 

So, bottom line we are waiting for her counts to climb and her to be acting a little bit more normal in eating and playing.  This has been a tiring hospital stay for all of us, but we are one day closer to going home, right:)

Pray for two plus days of 200 or more counts and her activity to be normal.

Quick Update Thursday July 22, 2010

Happy Sweet 16 to my niece Mariah!!!!  Wish we were there to eat cake with you:)

They think she has a viral infection, but she is still on antibiotics.  She spiked a fever, again, at 4pm.  It seems to be happening every 12 hours.  When it starts going up, she is very irritable.  We have to be 48 hours fever free before they will let us go home.  Her ANC was up, again today, which is good news. 

Scott and I are taking turns…she is not sleeping here very well.   Makayla has spent all her time here at the hospital and we have been greatly helped by Celina for running her back and forth so she isn’t here all day.  The PCA’s and Child Life are extra helpful with her as well as we (McKinley and I) can not leave the room while she has a fever.

This is hard, but God is good and we continue to plead with Him for our little girl.

Please continue to pray as previously stated.

Quick Update July 21, 2010

I (Sherri) am home with Makayla and Scott is at the hospital with McKinley.  She did well most of the day and did not spike a fever until 4:30ish this evening.  They gave her some Tylenol and she played and even ate a little for us….also drank about 12oz of water!!  She is on two antibiotics….one she can go off of when she is without a fever for 24 hours the other one her counts (ANC) have to be 200 and moving upward in order for them to take her off of that one.  This is the one that could prolong our stay as well.  We also can not leave until she has gone 48 hours without a fever. 

They assume that she has some type of viral infection which her body has the ability to fight off the same amount of time that she normally would.  She just ends up with a fever and a hospital stay instead of her body fighting it off.  They still have to cover all the bases in order to make sure it isn’t bacterial or fungal. 

I can not explain how amazing that little girl is….all that is happening and she blows kisses and high-fives everyone.  I am blessed to be her mother and have an enormous amount to learn from her.  I, also, need to mention Scott.  He has been an incredible support and help mate all throughout her treatment.  I miss him terribly when we have to spend nights apart but am thankful…..so thankful he is completely involved in her care and in helping me stay somewhat sane….that is yet to be decided, though:)

So, our petitions are:

ANC to continue to climb above 200 and not decline!

Her fever to be gone and never to return!

Good night rest in spite of the circumstances.

Quick return to our home and quick transition back to a routine.

Ridgway is still in the hospital too, please pray he start eating and his counts move up the ladder as well!!

Back at the hospital July 21, 2010

The other day when coming to clinic, I thought, I really don’t miss that smell.    Well, here we are, again…against our desire to walk back through the halls and be in patient again. 

McKinley felt a little warm to me after her bath last night, so we started monitoring her temp and pulse.  Her temp only hit their description of a fever (100.4) once,  but her heart rate was elevated so we called the doctor.  With her ANC (immunity) bottoming out, she is very susceptible to infections our bodies wouldn’t bat an eye at.  So, after getting up to our room at 2:30am and not sleeping much at all, here we are.  She has only hit 100.4 one other time since being upstairs and that was in the middle of the night.  She is acting ok, too…not completely chipper, but heck, neither am I.  We do have one of our favorite nurses, though….smile.

At the least, we will be inpatient for 3 days, but expect to stay longer if need be.  They have two antibiotics going through her and have drawn blood cultures to see if anything grows…those are not complete until 48 hours. 

I had a hard time leaving the house.  I was just starting to feel “caught up” and was thrilled to be home, in a sort of schedule and taking care of BOTH girls.  It felt good.  Last night we sat on the back porch watching the rain and eating homemade apple pie…..it was wonderful.  I’m thankful for a couple of weeks and pray this goes quickly and more importantly she turns the corner and the infection flees!  There is no other way to say it, but this is hard in almost every way.  God is good and He is faithful, but our life is difficult, but this beautiful girl is more than worth the fight.  Don’t you think that is what Jesus said about us…..

I popped on facebook while waiting in the ER last night and my friend, Sally had this as her status:

“Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security.” Jeremiah 33:6

PLEASE PRAY:

FOR THIS INFECTION TO FLEE HER LITTLE BODY and HEALTH TO BE RESTORED

Abundant peace to fill our hearts, including Makayla’s:)

Bloody Monday July 19, 2010

McKinley & Makayla with cousin Micah:)

The weekend:

Our weekend, actually, felt pretty normal….Yeah GOD!  We stayed home because her ANC (immunity) is too low to take any chances.  Makayla had a day camp on Saturday and we stayed home all day Sunday.  All of us had a quiet time in the afternoon, which was nice. 

Thank you for praying for her….her sleep is almost back to normal.  She is doing so much better and sleeping through the night….so a gianormous….YEAH GOD!  We are all so much more pleasant and more able to get things done when she is sleeping well.  Scott and I have had time to talk, which hasn’t happened since going into the hospital.  I know it is hard to believe, but you just don’t get much down time with all the interupptions in the hospital.

So, Thursday we had a clinic day and her hemoglobin was 9.1, which her goal for transfusion is 8.0.  I didn’t notice any sympotmatic signs as to her needing a transfusion, but was concerned that she might need one before Monday, which was our next clinic day.  Sunday, home health drew blood and on my way in to the hospital today our care manager, Michelle, called and said she needed a transfusion today.  Hence….bloddy Monday:)  Her transfusions have always taken 4 hours in the past, but they are doing it over 3 1/2 today and are able to do the lumbar puncture while transfusing……so much stuff going on for a little girl.   We are still at the clinic and are awaiting her to wake up and then she will have Vincristine (IV Chemo) and Peg Shot (Chemo as well).  We have to remain here an hour after the Peg shot in case of a reaction.  We arrived at 10am and it is 3pm right now….very long days at the hospital.  Makayla spent the day with Reese Clary and I’m sure she is having a good time….thank you Laura:)

UPDATE:  We are still at the hospital and it is 6:52pm….McKinley had an allergic reaction to her PEG shot and they gave her benadryl.  So, we are awaiting for a 1/2 hour response to the medicine and hopefully can go home in the next 1/2 hour or so.  It has been a very very long day, BUT we are going home!!!

We are very thankful for–Yeah God’s:

Her sleeping through the night!

Micah helping us out last week!

Her spirit returning to normal.  She seems more like herself each day:)

Time to actually “Talk”….

Continued Prayer…..

NO FEVERS OR INFECTIONS

Complete Divine healing

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.”  Matthew 7:7 

PLEASE JOIN US BY KEEP KNOCKING:)

July 14th July 14, 2010

Playing in my room!!

Today is our 9 year anniversary.  My parent’s came in town, again, which freed us up to go out on a date!!!  It was most refreshing to get out for a few hours and just sit for a bit.  Thanks, mom and dad!!!

McKinley is sleeping a bit better with the Melatonin and her attitude is much sweeter since they took her off the hydrocrodisone on Monday.  She is able to focus on playing for a longer period of time, has allowed her cousin to watch her while I do things around the house, and is much easier at bed time.  She is more herself, so a HUGE YEAH GOD!!!  We still have a ways to go on the sleeping issue, but we think time will be the biggest determining factor.

This week I have deaccessed her port and given her chemo two different times, along with her normal daily temperature and pulse check.  I REALLY like being an accountant much better, but am glad that we are able to do some of these things at home and not at the hospital or clinic. 

We found out today that her hemoglobin is 9.1, which is borderline low for her and her ANC (immunity number) is 520.  It is amazing how quickly the chemo can drop their numbers.  On Monday of last week her ANC was 6,600.  When her ANC is lower than 500, we have to be much more careful with germs and bacteria and, and, and.   We are praying that the chemo doesn’t keep her ANC low for the entire consolidation phase. 

So, please continue to join us in praying specifically:

*Her body keep producing healthy cells in spite of the chemo.

*No fevers or infections!!!!

*Her sleep return to normal….this is a struggle for the entire family.

*We continue to find ways to love on others who are living through the pain of a child with cancer.

Please continue to pray for our friends on this journey:

Allison

Bella

Blake

Ridgway

Tilly

Week one down…. July 12, 2010

McKinley with the dog "Butch" that AJ gave her:)

SUNDAY NIGHT:

We have one week of consolidation down and three more to go.  This seems to be a pretty rough regimen and it is taking it’s tole on all of us.  Makayla said tonight that she wished her sister would get better.  McKinley is doing well taking her medicine and tolerating them, etc, but is having difficulty sleeping.  Which means Scott nor I get much sleep.  At first it was taking us hours to get her to sleep, now, if we get her to sleep and try to lay her down, she screams….cries….whatever it takes to let us know that she wants us back up and either walking with her (25+ pounds) or rocking her.  We feel like we have tried everything, but to no avail.  She literally slept 2 1/2  hours on Saturday night and now at 10:44pm…Scott is having a hard time getting her to sleep.  I know she is exhausted, she has to be.  The only thing we can figure out is the steroid she is on (hydrocortisone) is causing insomnia.  Last night she just wanted to play and her roid rage would not allow us to even lay in the floor and sleep while she played.   Sometimes it is also hard to get her to calm down and redirect.  We have an appointment tomorrow and I will discuss with the doctors.  I know part of her frustration is probably the change of surroundings and it being overwhelming, but I can’t imagine that being but 25% or so.  So, please pray for her to sleep well through the night and nap well during the day.  It is wearing hard on Scott and I.  We made a shift plan of me taking 11pm-3am and he taking 3-6am and me taking back over at 6am for him to get ready. 

We did have a little mishap….she fell on the concrete and developed a little raspberry on her forehead.  We weren’t too concerned about it, but did check her port to make sure nothing happened with that and noticed that the bandage was coming off.  We called the Dr and they told us we could deaccess her port.  So….I called our friend, Sherie Miller…Ridgway’s mom and the family came over for a late evening visit to help teach me how to deacess.  Thank you SHERIE!!!!  Xander and Ridg sang the best rendition of “Itsy Bitsy Spider” that had her speechless while removing the bandage (which is the worst part).  We love you guys and are thankful God crossed our paths! 

We have had a good weekend apart from the sleep issue and trying to keep her satisfied.  We’ve grilled out a few times, had the kiddy pool up for Makayla, taken a few walks and went to church on Sunday!  Normal family activities and we are thanking God for each moment. 

MONDAY:

Well, she slept through the night last night!!  Yeah God!!!  We were, actually, shocked.  Micah, my niece, even said she was surprised she didn’t hear her last night.  She woke up at 7:30am and walked into our bedroom.  We transitioned her to a toddler bed thinking that she felt too confined in the crib…at least under all the circumstances. 

Today was a FULL day….as will be every Monday.  I was up at 7:30 and it took every second to get us ready and out the door by 9:20 in order to make it to the hospital by 10am.  McKinley had to go NPO (no food or drink) and it was quite a challenge for a while.  I had to have our care manager hide my bag that always has food in it and she threw a huge fit when the bag left….it’s kind of funny now, but not so much then.   They had to reaccess her today and I had to restrain her yet again…..this has become one of the hardest part for me….restraining her.  I thought it would get easier, but it hasn’t.  I, actually, cried today after they accessed her.  The lumbar puncture went very quickly today….was scheduled for 1pm and we were out of there by 2pm.  She did fantastic!  They gave us a prescription for melatonin and she fell asleep tonight in about five minutes!!  Melatonin is my new friend.  Hopefully, it will produce a full night sleep as well.  They also took her off of the hydrocortisone today.  They ran a test last week while we were in the hospital and it came back today, so she doesn’t need to take it.  Our prayer is that she will be able to return to a more normal now.  I know being home is overwhelming as well, but we both really think the drugs play a large part in it too.

I will try to post tomorrow a list of needs now that we are home.  My friend, Buffie —btw, thanks for the yummy dinner, Buffie — is organizing meals for us on Mondays and some Thursdays, since those are our busiest days.  We have made a wish list on Amazon of things that we think will be helpful on clinic days.  I will post a link to that as well.  I will need sitters for Makayla on Monday’s until school starts in September.   It is very difficult for us to even request help, but we are at a place where we need it.  We are most thankful we have the Body of Christ to depend on:) 

Please continue to pray.  That, of course, if our greatest need!  We love you all!

Busy, busy past few days, but Yeah God we are HOME! July 8, 2010

Out on Pass last week!

I really thought I’d have a chance to blog yesterday or even on Tuesday, but both days came and went so quickly that I wasn’t able to sit down and “journal”. 

Monday was a semi-tough day.  The nurse was not able to draw blood out of her PICC line for her labs.  They called the PICC nurse and she put TPA in her line two times….of which each time they have to wait at least an hour to see if the blood thinner clears out the line.  After working through that, the doctor decided it was best to access her port, but that didn’t happen until around 4pm.  The tough part is holding her down…at least as a parent.  She looks up at me as if to ask why would I be holding her down to have someone poke a needle in her chest.  I know it didn’t hurt her, but it isn’t something mom usually does.  Regardless, her port was accessed and consolidation began!  They pulled her PICC line out before we came home on Tuesday.  So, she only has one point of access:)

Tuesday, the attending doctor, Dr. O’Brien, who is McKinley’s main doctor, said in rounds that she could be off of her fluids around 2 and we could go home.  The only way I can explain the way I felt***summer vacation as a kid.  Knowing that something big was over and heading on to summer fun:)   While, I don’t get to sleep in and play most of the day away, I know that, even with leukemia,  our life will be a bit easier than it has been the last forty-five days.  While we appreciate and love all of the doctors, nurses, pcas, cleaners, child life, etc, we are glad to be at home without a window to the medical world just twenty feet away from our bed.  It may not even be that big of a room:)  We have privacy and family time, again!!  We are all thrilled to be home sweet home!!  Yeah God!

We arrived home around 2:30….Makayla was extremely excited.  She jumped up and down, on and off, over the course of two or three hours.  She informed us that she didn’t need a babysitter any longer because we were home.  She questioned us as to McKinley going back to the doctor and how much time that would take.  Yesterday, Wednesday, she clung to my side all day long.  This is no exaggeration.  I just let her cling, even though I would love to have retreated into hibernation for a few hours.  Today we had to go through the timing of me being gone to clinic.  I have to say, that Makayla is one amazing girl.  I try not to brag on my girls too much, but she has been shifted from family member to family member and been excellent in everyone’s care.  I honestly believe that God protected her and loved on her even when we were not able to.  Scott and I are both so very proud of her perseverance and sweet disposition amid this stressful situation.

McKinley is doing well at home.  She seems to enjoy being home and having sissy around.  The only problem we have had is going to bed, which we knew would be an issue.  In the hospital, she had a regular hospital bed and we slept on the pull out just beside it.  We think she became accustom to mom and dad being right there when she opened her eyes.  Tuesday night it took four hours to get her to sleep and last night it took three hours to get her to sleep.  Hopefully, we will continue to trend down.  She, too, is an amazing little girl.   She has gone through people looking at her and messing with her over and over and over and still wants a high-five from them when they are done or will blow a kiss to them when we are leaving.  I know I wouldn’t be passing out high fives in this type of distress….again, the only answer can be God and His amazing provision in this situation.  So, two YEAH God’s one for each of our girls!!!

Scott is back to the grindstone at work and I am attempting to get things back in order here at home.  Mariah has done all of our laundry and I have done some cleaning and organizing.  It took a bit to simply figure out our schedule and medicine for McKinley.  Yesterday the home health nurse came and administered her chemo for the day and drew labs.  They will continue to do this, which is so much nicer than going to clinic, but she was here for about 2 1/2 hours since it was the initial visit.  I was exhausted by the time she left.  Mariah and I also organized all the medical supplies that home health brought.  Our home has been invaded by heparin flushes and chlorophyll scrubs. 

Now to explain where McKinley’s treatment is……she started what they call consolidation and this is a 50 day phase.  Most patients do not finish in 50 days, but  that is how the schedule is set up, initially.  She had a pretty intense chemo (Cytoxen) on Monday (inpatient), which requires her to have 24 hours of fluids after the chemo to flush her kidneys.  She also had a chemo called cytarabine.  She had this chemo on Tues, Wed & Thurs.  She will have this chemo on Mon-Thurs of next week as well and is taking a 14 day chemo orally which also started on Monday.  Then she will have a chemo called vincristine (she had this in the inducation phase) the following two Monday’s, with a  Peg shot (chemo) on the first of those Monday’s.  Each Monday, she will also have a lumbar puncture with a chemo injection.  This phase repeats the same regimen (minus the lumbar puncture) as soon as her counts rebound to 750 or greater.   Home health will come on Sunday and access her port and draw blood for her labs.  On Wednesday they will come as well and draw labs again.  Our schedule for the clinic are on Monday and Thursday.  Monday being her main clinic day.  They want to her to been seen two times a week since she is so young.  Today we had a 9am clinic appointment and arrived back home at 1:00.  Long day, but we CAME back HOME:)

McKinley’s ANC (immunity count) was 6670 as of yesterday.  They expect her count to start dropping 5-7 days after the first chemo, which was on Monday.  We hope that she will stay up for a while.  We are planning on going to church on Sunday!  We will simply keep her in the service with us instead of in the nursery.  As long as her ANC is where it is at they are not too concerned about infection, but we still have to be super careful and as clean as we can be.   They did deaccess her port today so she can take a bath and play in Makayla’s little pool this weekend!!!  That is BIG news!!!

Thank all of you for your support and love over the past month and a half.  We have felt and seen the love of Jesus through you.  Please continue to pray for our family as we have a large hill to climb over the next couple of years.  God is good, God is who He says He is, God is our provider, God IS!