I left off last time by sharing Tessa’s Myelodysplastic Syndrome (MDS) diagnosis with our readers.  Since then we have continued to wait for answers as her doctors search the best options for treatment.  As frustrating as waiting is, I am sort of okay with it since she appears to feel pretty good, and of course she doesn’t have the side effects from any medication from a treatment yet.  On the flip side, each day that passes is another day for her MDS to possibly progress.

We met with her doctors in Madison yesterday to do a CBC (complete blood count) and to discuss what direction we might be headed.  Her white blood cell count (WBC) and her absolute neutrophil count (ANC) both returned into the “normal” range for the first time in a long time, while her platelets are still bouncing around 40,000-50,000…which is still far below the “normal” range.  The good news is that if she were to catch a virus right now, her body would be okay to fight it.  But I know how this blood game works…I know that by the next time we go, it could all change again.  I remember for her first bone marrow biopsy that her numbers changed quite a bit from her CBC the day before.  However, for yesterday I am taking our good news and running with it until they tell me to stop.

More uplifting news followed when they told us they did not believe a bone marrow transplant was going to be the best option at this time.  For Tessa the procedure is far too risky.  While talk of a transplant is at the other end of the table right now, that doesn’t mean that someday it won’t become a real option.  We are waiting to hear back from a specialist at the Children’s Hospital of Philadelphia to confirm if Tessa would be a good candidate for a new outpatient chemo for MDS in children.  This chemo is typically used on the elderly who have MDS, but is breaking ground for pediatric cases.  Should we get the go ahead, the process to start treatment will begin quickly.  Unfortunately, since the situation is quite rare, there is not a whole lot of research available to support the decisions that need to be made.  While chemo sounds intimidating (and it is), this is most likely her best option.  We know that what her body needs is a treatment of some kind…so now that we have arrived in this place, weighing out the best scenarios for treatments almost seems like second nature by now.

So we wait…

In the mean time, we decided to talk with Casin about Tessa’s illness.  He was aware that she has been going to the hospital weekly, but never knew the specific reason until this morning.  Dan and I talked with him and explained that her bone marrow is confused and that isn’t making the right amount of cells for her to be 100% healthy.  We told him she would get medicine to help make her better.  But then he asked us, “What if it doesn’t work?  What if none of the medicine works?  Then what?”  I looked at Dan helplessly, hoping he could come up with an answer that would suffice.  And of course he did.  He told him that Tessa is strong and that she will help the medicine fight really hard.  He said if it really doesn’t work, that her doctors would find a new medicine.

Then Casin told us he would help save her if he needed to…

Be still my heart.  Be still because he is her sweet big brother who has no idea how powerful that just was.  In that moment he was willing to give everything so that his baby sis would be better.  Despite everything, hearing him say that reassured me in ways I can’t explain.

I am going to bed with a renewed spirit because my little fighter needs that from me.

Good night.  

MDS Awareness


Thank you for the kind words, uplifting messages, cards and especially for the prayers for Tessa and for our family.  The continued support that surrounds us amazes me.  Keep those prayers coming!  They certainly are working!  

4 thoughts on “Waiting…

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