Tuesday, September 25, 2012

Shifting the Atmosphere

Doing Homework in Clinic
Mireya has had a couple of really good appointments.  Her counts are fluctuating between good and very impressive.  She's been placed on a schedule to wean her off the immunosuppresion meds.  This has us a little concerned because it seems so early.  It wasn't until after she was taken of her Tac earlier this year that we began to see the rapid decline in her counts.  With the GSCF we see her counts soar across the board and recently without the GSCF, her counts are holding in a good place.  Our Medical Team is approaching this weaning process very cautiously. The biggest concern is graft failure or Graft vs. Host Disease (GVHD). With this new train of thought, we realize having her on immunosupression meds for the longer duration may have hindered her early on as opposed to help her because the suppression meds not only suppressed her cells but also suppressed Jalen's.  When she was taken off completely, Jalen's remaining cells were decimated by hers.  We're hoping as we dial back the suppression meds that Jalen's will continue to have a foothold and flourish without opposition.  It appears to be working because the last two chimerism tests showed a decrease in Reya's cells.  Thank you Lord!

Reya continues to enjoy her afternoon classes with her teacher.  I met with the school this week to put an IEP in place for Mireya.  That is a very involved process.  Fortunately that document can be amended and modified as needed, but I'm happy with what we have in place.  Mrs. Saum introduced the "Monkey" to Mireya's class along with some pictures of Reya.  The class sent her a really awesome picture in return.  Mireya was so happy to see all her future friends and classmates holding and huddled around her Monkey.  She giggled with excitement. #priceless

We're very thankful for Mireya's progress over the last week.  Thank you for your continued thoughts and prayers.  We believe our praise, prayers and worship have created a shift in the atmosphere and everything we stand in need of, God will provide.

Wednesday, September 19, 2012

Full Days

Today was a big day.  Mireya had clinic, which was full of shifts and turns, but today was also her first day of school with her teacher.  Clinic we won't spend to much time on, we'll just give it to the Lord and continue to trust him to work it out.  A second chimerism test showed a significant jump in the presence of Mireya's cells which has us all concerned. As a result, Reya was taken off of one of her immunosuppresive medications.  She has been taking two and it is likely those meds are also suppressing Jalen's cells.  Reya was given GCSF today to see if we can boost her counts.  Her white count took a surprising dip to 1.8 (ugh).  That pesky cough has also intensified.  We are scheduled to have a chest scan done at our next appointment. Infections can crush your white count.  Take in consideration a white count that is already significantly low, add illness and the outcome is a severely taxed system that can collapse at any moment. Prayerfully the GCSF makes a difference. A additional chimerism test was ordered to see if dialing back the suppresion medication over the last week has made any difference in the ratio of cells.  Another concern with eliminating the suppression medication is the increased chances of GVHD.  Again, we're giving it to the Lord and believing he will work it out.

Mireya was super excited to start Homebound with her teacher, Ms. Saum.  They worked on several projects, read books, drew pictures for a book the class is working on and talked about the Constitution.  Jalen's class is also working on the constitution. Mireya thought it was cool 'she' was working on something Jalen was also learning about in his class.  Ms. Saum told the class she would be seeing Mireya after school.  They were all very excited and inquisitive about the classmate they have yet to see or meet.  One of the projects Mireya worked on was a "Me" drawing.  Her "Me' drawing was so cute. She drew a picture of her dancing.  It almost looked like she was floating in air. The part that tickled me the most is she highlighted the 'fabulous' shoes she drew in picture.  I'm glad Ms. Saum will be able to share Mireya's work in class so her classmates will get a sense of who she is...my little dancer with impeccable fashion sense.

Mireya is scheduled to received one hour of instruction each day (this can be altered, as needed).  After a long day in clinic, it was apparent toward the end of the hour, Mireya was tiring of the process.  Overall, Day 1 was a huge success.  I'll have to find something really fun and special to do with Makinley during Mireya's Homebound sessions, because she was having a bit of a struggle with not being 'included' in the lesson plan.  Ms. Saum will also be introducing the class to "The Monkey" this week.  We're so thankful Mireya can receive instruction and participate in school through this program until her health improves.  We're looking forward to sharing a favorable report after our next appointment this week.  Continued prayers as we toe the line and keep the pace.

When you pass through the waters, I will be with you, and through the rivers, they will not overwhelm you.  When you walk through the fire, you will not be burned or scorched, nor will the flame kindle upon you.  Isaiah 43:2

Sunday, September 16, 2012

Color Run Fun

My big girl had some fun in RVA this weekend at the Color Run, dubbed the Happiest 5K on the Planet.  After visiting the website and seeing all the awesome pictures taken, I definitely want to participate in this event when it comes back to town or close by.

The Color Run benefits a local charity in each city where it is held. This year the selected charity was Church Hill Activities and Tutoring (CHAT). CHAT creates and sustains intentional communities that are dedicated to transforming the lives of at-risk youth in Church Hill by equipping them to rebuild the city through academic instruction, character development, life skills training, job-readiness and internship programs, and health and wellness activities. Visit their website at www.chatrichmond.org.

I didn't get to spend a lot of time with Paris while she was here.  I'm totally OCD about germs and infections, so she and her crew stayed at her Dad's. It's funny how your kids come home and have agendas and so many 'things' going on, but I had to see my girls face and wrap my arms around her before she left.  I loved the few moments I had to spend with Paris and the LC girlies. That actually goes down as the quickest visit to date, 00:30:00.

I realize this stage and phase of life for Paris, is going and growing but I'm so glad we are able to talk, Skpe, and Factime several times throughout the week.  It allows us to connect, remain abreast of the happenings and affirm our relationship in a new way.  I'm looking forward to kicking Aplastic Anemia and treatment to the side and living freer, doing more and not missing out on things I/we would normally be doing.  Right now in this season of our lives, caring for Reya and guarding/protecting her from any and all things that could prove harmful is our top priority.

I love you pare, paulap, apari, pipi....my heart, my sweet girl and original road dog.

Saturday, September 15, 2012

Holding Steady

I Heart Bacon
We had favorable appointment to round out the week.  Reya's counts are holding steady.  We didn't have to receive GCSF and one of her immunosuppressant medications was dialed back.  Hopefully it will allow us to see what her body can do with less suppression in place.  The chimerism results showed a combination of cells, but Wonder Boy Jalen's were most prevalent.  This is an excellent sign.

Mireya is having a difficult time sleeping at night.  It's not uncommon to find her awake singing or wandering around in the wee hours of the morning.  This super night owl schedule causes her to be extremely tired throughout the day. We had this problem post transplant last year too. We're not certain if any of her meds are specifically creating an issue, but we'll bring it up when we're in clinic next week.  Reya's appetite is also a bit quirky. You never know how chemotherapy will affect the taste buds. Her all-time favs this week are hot dogs, bacon, frozen pancakes and butter crackers.  Reya has asked for these butter crackers as an appetizer, side dish and snack. At this rate, I may have to buy stock in Eggo, Oscar Meyer and Keebler.

Mireya is very happy to be home, she tell me at random points throughout the day how happy she is to be in her house, in her bed and with her family all together. Thank you so much for your continued prayers.  Please say an extra prayer for Mireya and her ability to rest at night. 

Friday, September 14, 2012

Musculoskeletal Madness

Jalen came off the bus looking like he had dislocated his shoulder.  He said he was not in pain, but said that something happened when he reached down for his scissors while sitting at his desk at school.  These are the type of issues that always happen after 4pm on a Friday.  Fortunately I caught the Pediatricians office before the phones rolled over and was told to take him to Orth On Call.  Who knew this place existed? I wish I had thought of this.  Well I'm not an Orthopedist, so no gain on this one, but its great to have a Urgent Care Facility specifically for joint and bone injuries in the area. Especially after hours and for those weekends that specialize in rolled ankles, fractured wrists and broken bones.  We walked in and sure enough there were several other little ones and their families dealing with sporting event mishaps and 'out of control' play injuries.

When it was time for x-rays, Jalen's medical setting anxiety tried to rear it's head.  We had a huddle, I gave him the breakdown (oomph-a-breakdown), yelled 'break' and he went in there and got those three x-rays done. *high five son*  I'm realizing we have to navigate one medical situation at a time until Jalen really realizes, even if someone has to do things he may not like or that temporarily cause him discomfort, overall it's to help him.  After a few x-rays and an hour or so of waiting, we were happy to know it was not dislocated.  Apparently when Jalen reached for his scissors, it triggered the muscles in his neck and shoulder to seize up.  He had a sizable group of nodules on the left side of his neck, making it very difficult to turn his head to any degree on that side.  I had a similar episode many years ago while  simply reaching for a phone that triggered almost paralyzing pain, so I could immediately identify with the situation.  That was the beginning of my love, love relationship with Chiropractors.

It was very disturbing to see Jalen's shoulder (visually it looked like a see-saw, up on one side and down on the other), but he found that holding his shoulder low, alleviated the strain and discomfort in his neck. The diagnosis was Cervical Strain/Torticollis. We were told to give him ibuprofen, apply moist heat and rest the area as best we could.  He has a follow-up appointment with a Pediatric Orthepedist this week because alleviating the problem may require physical therapy. I'm a proponent of applying all techniques and methods that can get you back on track quickly. I've had a number of sports injuries and sports-related surgeries, requiring on-going physical therapy and debilitating sedatives.  I find it interesting that most medical practices don't endorse or suggest Chiropractic care as an option.  Fortunately I know first hand the benefits of both, so I chose to have Jalen assessed and adjusted by a Chiropractor the next day.  Within minutes he had a greater range of motion and we were able to tackle those knots in his neck.  We continued the regimen of heat and rest and Jalen is feeling considerabely better.  We'll monitor his progress and prayerfully have success within the next few days through home remedies and rest. 

Monday, September 10, 2012

Life & Monkeys

Our last appointment was a positive one.  The GCSF has helped to increase Mireya's counts.  Her magnesium still lingers, so we'll up the frequency of the IV Mag at home.  Mireya has also developed a slight on again off again cough.  We will need to restart the pentam in about 10 days to help fend off pneumonia.  Her tac level came down considerably and now is below normal.  This count is a mystery...26.6 to 6.9?  Mireya looks good, sounds good, and hasn't displayed any of the markers for GVHD (Graft vs. Host Disease). Thank you Lord!

Mireya will start Homebound soon.  Her kindergarten teacher has volunteered to be her Homebound teacher which is really exciting and a blessing.  We talked to the ASK team this week about Mireya, school and the " Monkey in My Chair' program.  I'd received information about the program from another clinic mom, whose sweet little girl also started Kindergarten this year.  'A Monkey In My Chair', was created to allow kids in treatment to remain included and connected to their class.  I was disappointed when registering to find the program was only extended to children with Cancer. Diagnosis aside, this is something that would be wonderful for any young child going through treatment that prevents them from attending school.  I really love the concept and had been thinking about how we could possibly incorporate something similar for Mireya while she is away from her class.  From the hearts and through the connectivity of some very thoughtful people, this sweet Monkey found his way to us (some rules and restrictions are meant to be bent just a little). We're all in this together, and definitely wish none of our kids had to deal with anything having to do with chemotherapy, transplants or with life threatening appended to it. I'm super happy she'll be able to take advantage of this program until she can physically join her class next year.

We're thankful for stabilizing counts and continuing to pray for an increase in Mireya's ANC, hemoglobin, platelet and white cell counts.  Everything is working together for our good.  We're standing on that word. Thank you Lord for continuing to do what only you can do....sustaining and preserving life.  Living (L) Intentionally (I) Fully (F) and Expectantly (E).

Thursday, September 6, 2012


Mireya's tacrilimus level is still elevated.  Testing this level allows us to determine how the medication is being absorbed in her body and if it remains below the toxic level.  There are several signs of Tacrolimus toxicity, the most urgent is kidney damage.  It is important that we get this level under control.  Mireya's magnesium level has also continued to decrease.  Managing Mireya's medications is a balancing act.  We have antiviral, antifungal, antibiotics, electrolyte repletion meds, sludge removal meds (liver), multivitamins, folic acid and two immunosuppressive medications.  One of the negatives is several of these medications counteract with the full success of a few others.  Doing level counts and making necessary adjustments along the way is very important.  Mireya is a trooper with taking all of these medications as scheduled.  After receiving counts, one of the medications has been eliminated from the roster.  IV Magnesium has been added to hopefully get her levels up and she was also given GCSF to see if we can boost her white cell count.  Reya's platelets are over 170k, which is amazing.  Typically the platelets are the last of the counts to increase.  It's a little puzzling as to why of the three lines the platelets have jumped the highest the quickest, but we'll take it.

Our current schedule is at least three times a week for counts and any necessary treatments.  The appointments/days can last for hours.  After this week I feel like I should collect a paycheck for the hours clocked, but it's definitely better than being in the hospital, so you take it all in stride.  We enjoyed birthday cake today in celebration of all the September Hemoc birthdays.  Special thanks to Cakes by Graham.  It was beautifully decorated and absolutely delicious.  We also had a special visit with Music Therapy while we waited. Mireya enjoyed playing the guitar, singing songs and banging on the hand drums.  She shared with me, she would like to take guitar lessons.  Strumming is great, but rocking out with a pic is Mireya's preference. These programs and visits make the time 'seem' to go by quicker and always brings a smile to the face of the children. 

We're back in the mix manana and hoping some of these modifications will bring about positive results.  God is continuing to work it out.  He never slumbers nor sleeps and because of that I can lay my head down and rest well at night.  Thank you for continuing to visit the blog.  Everything we need God will provide.  This is my confession and my belief.

Confession & Expectation ~ Phillippians 4:19
My God shall supply all my needs according to his riches in glory by Christ Jesus.

Tuesday, September 4, 2012


It's been a weekend filled with sadness. Cancer has taken the lives of two very special people.  There are no words for the heartache and grief we feel.  We're grateful to have known a vibrant, warm and loving woman & mother who fought cancer with her daughter (twice) and won, but sadly has lost her own battle.  We pray for a family who will no longer enjoy the laughter and smile of their sweet 4-year old little boy.  We've spent the last 16 months, praying for, encouraging and celebrating every milestone with one another (no matter how small or incremental).  It hurts.  Enjoy and savor every moment you have with your children.  Hug them and remind them often of how much you love them.  Life is so precious.

This was our first day in clinic since being discharged over the weekend.  Mireya's counts are still fluctuating.  Her physicians are very concerned about how high her tac level is. We will return to clinic in the morning to have the level rechecked.  A chimerism test was also ordered to show the cellular makeup of Mireya's cells. Boy (Jalen), Girl (Mireya) or both and to what degree (we're rooting for the Boys). It is really important that we keep Mireya protected from bacteria, illness and infection.  Even though Mireya's counts are registering in fairly acceptable ranges, she is immune suppressed and her system is extremely fragile.  Hand washing, sanitizing, mask wearing and avoiding crowds and situations that could prove potentially harmful (which is pretty much everything) is essential.  Mireya has been less cooperative about wearing a mask.  Last year we could decorate them with Princess stickers to make it a little more tolerable.  This go round, she could care less about stickers and is extremely sensitive about people 'seeing' her with a mask on.  This is something we'll continue to focus on 'why' it is important and keep pushing through.

Comfort and peace for these dear families as they maneuver through the days ahead without their loved ones.  We are so fortunate our paths intersected and we're thankful for the imprint they left on & in our hearts.  It will forever be cherished.  Prayers for all things that concern and consume us.

Psalm 46:1 God is our refuge and strength, an ever-present help in times of trouble.

Saturday, September 1, 2012


Ready to Go Home

Riding & Designing

Home Sweet Home
Hmm it was a toss up between Freedom (George Michael), or a line from Peebles, 'I'm out the door babe, there's other fish for us to see' (#TeamBolton revamp).  Blame it on a dozen SongPop challenges while at the hospital or my love for the 80's.  Either way we are home...Jesus, Jesus, Jesus (Rev. Timothy Wright).  You should always have a song in your heart and a 'jukebox of praise' (Pastor Calvin Duncan).

We're so happy to be home together @Last (Etta James).  Thank you Lord!  We have a small arsenal of medications and an even tighter schedule to follow (we left with spreadsheet in hand).  Masks have been set aside and reminder notifications have been set. Monday is a holiday, so we'll come to the Transplant Unit tomorrow for counts.  Then it's back to the Hemoc hustle on Tuesday, after getting Jalen on the bus.

Thank you for your prayers, support and love over the last several weeks.  We're praying that Mireya's counts will continue to increase and she will be without illness or issue as we maneuver through milestones and treatment.

Psalms 100:2 Worship the LORD with gladness. Come before him, singing with joy.