Wednesday, April 18, 2012

The Wait Isn't Over

Our follow-up appointment this week was not as favorable as we would have liked.  The biopsy last week was a 'fail' and as a result will have to be repeated.  My heart sank after hearing this news.  They were able to remove a good bone chip sample, but apparently there was not enough of the marrow substance available to do the in-depth testing needed.  From what they could see, it was determined there were no 'blasts' present on the slides from the aspiration of her bone marow.  When a higher than normal ratio of blast cells are found it is usually indicative of the common blood-related cancers.  This is a discussion 'first' for us as it pertains to blasts, but we know certain medications taken during our treatment plan can increase the probability of certain blood-related cancers, so it was good to speak and rid ourselves of any additional madness.

It is disturbing to imagine having to go through another bone marrow biopsy.  It took a lot to sit in the room while they performed the biopsy. Thank goodness Mireya is anestisized.  Sitting through it again is not high on my list of things to do, so perhaps I'll 'sit out' of that particular portion of the procedure when/if it is necessary to repeat. Mireya's counts have also decreased this week.  We were hoping to see some sort of rebound and that her cell lines would increase if only in small increments. Without the sufficient test results, the medical team is at a loss of what is causing these problems. We were pretty much off the Aplastic radar and placed in a rotation to ride this out for another few months, remove the Hickman and then come in for routine follow-up to track our success. The fact that her counts have decreased and there is no evidence of a virus or infection is puzzling.

Upon further review of Mireya's labs over the last several weeks, and the downward trend of certain counts, the Head of Pediatric Hematology & Oncology, decided she would like to first give Mireya a IVIG infusion to see if possibly that will jump start her counts to increase.  We did two rounds of the IVIG close to a year ago with no success, but at that time Mireya's body was not producing or holding any counts consistently without continual transfusions.  Dr. Godder believes it could be ITP.  ITP was the initial thought when all this started until about two weeks later when we saw significant drops in her white and red cell counts. It wasn't until after those results that she was diagnosed with Aplastic Anemia. We're not 100% convinced it's ITP as ITP only affects platelets, especially with the dip this week in her hemoglobin count.  We are open to trying the IVIG and see if it makes a difference before repeating the Bone Marrow Biopsy.

Many of you know Mireya's Medical team submitted her to the Make A Wish Foundation.  The Make A Wish Foundation is an incredible organization that grants wishes to children battling life-threatening illness.  Mireya was approved for a wish and would like to go to Disney World to meet Princess Aurora (a.k.a Briar Rose and ultimately Sleeping Beauty).  This trip is scheduled within the next several days.  It has not been determined if we can still go.  Based on this new turn of events, the ability to travel for now is up in the air literally a day or two before we're to board the plane.  Mireya's health is the of the uttmost importance.  We consciously decided not to tell the children about the trip when we found out several months ago. One, anything could happen (tada) and two I really didn't want to be asked daily 'is it time yet'.  However,  Make A Wish and a awesome company in Chester, Cellular Sales  threw Mireya a 'Send Off Celebration' a few weeks ago. Mireya, is now fully aware she's scheduled to go to Disney World shortly after her birthday and is really looking forward to it.  I definitely have a lot to share about the Send Off and how amazing Celluar Sales in Chester is.  Ironically, this entire downward sprial began the morning after that celebration and I've not had the chance to share how incredible of a night that was for us (more to come, so look out for that post soon).

The IVIG is scheduled for tomorrow on Mireya's birthday.  Not the way you want to spend your birthday, but trust me we will celebrate BIG when she gets home.  Reya will have to be retested with 72 hours following the test and we will go from there.  If there is no significant increase in the counts, the team plans to repeat it a second time. It is not uncommon for a patient not to respond after just one treatment. This is where it may get tricky as far as travel timing.  We do not want to have issues that require medical attention or transfusions while we're out of town, nor do we want fatigue to be an issue for her with a hemoglobin level that is dropping.  It is possible to give Mireya a blood and platelet transfusion prior to going to Disney to tide her over through the trip. We're believing we'll have positive results next week.

If there is not a favorable response, then we repeat the bone marrow biopsy to determine the cellular makeup of her body. Specifically her cells vs those given to her by Jalen.  If all else fails, she will have to receive a 'boost' of cells from Jalen.  This procedure would not require her to go through a full transplant with chemotherpy and the full scope of meds again  It most cases, the 'boost' has proven successful when a bone marrow recipient has exhibited these issues and other treatment options have not worked.  Jalen on the other hand, would have to endure the same process to harvest his bone marrow.  I'm hoping we don't have to go this route because I really don't want Jalen to have to go through this again. However, I realize God gave us Jalen as a way out and we are thankful we still have her brother to draw life from for his sister.   Continue to lift us up as a family.  This has been an emotional pill to swallow, but we know nothing is to hard for God.  Even as our emotions fluctuate and we struggle with finding ourselves in this place right now, we know where our trust lies and our faith has not wavered from that truth.

Be strong, all who wait with hope for the Lord, and let your heart be courageous.  Psalms 31:24


  1. God bless you and your family, Venus. God put this trial in your lives for a reason, whether we know or ever find out what the reason is. I know you don't hear from me much, but please know I am following this and I am always lifting all of you up in prayer with praise to God. Please don't hesitate to reach out to me if there is anything I can do.
    Biblegirl xoxoxox

  2. Thanks you girlie and I appreciate the note and your prayers. Let's catch up really in 2012 =)

    1. WOULD LOVE TO!!! Will drop everything when you are ready!!! Just call!!

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  4. Well I see this as good neutral news.Counts are down but not dramatically so and new cancer has been ruled out. And at least we have some options other than another BMT. I know the goal is 100% healthy and recovered. I hope u guys are able to take the trip and as always me and my little peeps are praying for her complete recovery but thanking God for every little bit of neutral (or good, we'll take good) news we get.

  5. Praying for you and your family. Keep pressing forward.

  6. Venus, I am up early this morning in prayer and led to your page to see how your baby girl is doing. I am keeping her and your family covered in prayer. I love you.

  7. Thank you all...continuing to keep the faith. We appreciate you prayers and thoughts!