Relapse

Mia had her Bone Marrow biopsy and aspiration.  She always does so well with that stuff.  She is really a great patient.  The procedure was done in the PICU at St. Luke's.  She saw several of her favorite doctors and nurses.  They are all so nice up there and make her feel so special.

We had planned to do the lymph node biopsy surgery the following week (last week) but the surgeon was heading out of town the following day and didn't want to leave Mia in post-op while she was away, so the surgery was put off till this week.  In the meantime she went in for an IVIG infusion the day after her bone marrow procedure.   While we waited for the infusion, her doctor called me in.  The results of her PET scan were back. It indicated lots of activity in her spleen.  The doctor didn't want to call it a relapse until we received confirmation either from the bone marrow or the lymph node biopsy.  In the meantime another appointment was scheduled for the following week which was last week.
 
At our appointment last week, her counts were even lower.  Her platelets were at 6, nuetriphils at 320 and hemoglobin about the same, below 10.  And we had the results from the bone marrow.  Good news is that she doesn't have to have the lymph node biopsy, bad news is, she doesn't have to because the cancer now shows up in her bone marrow.  She has relapsed.  The doctor wanted to start her on a new round of chemotherapy that same day, but I insisted that first he send the information to the doctors in Seattle to see if they have any ideas on treatment and how to proceed.

Everything we have been reading about this cancer AITL (angioimunnoblastic t-cell lymphoma) when it relapses is fairly grim.  I am learning that the hope is that each treatment will prolong life a little so that hopefully new treatments and eventually cures can be found.

She will be having a lumbar puncture on Wednesday.  They want to make sure the cancer hasn't reached her spinal fluid.  I would assume that would be very bad.  All along we have never received any kind of prognosis or staging of this cancer.  It is simply to rare.  Unless something comes back from Seattle that suggests another treatment course we will be starting treatment on Wednesday.  She will receive six round of treatment every three weeks.  Each treatment consists of a half hour IV injections three days in a row.  IF she shows a good response to this treatment we will probably doing a donor bone marrow/stem cell transplant at the end of it.

Every time I think about what is happening  I get a rock in my stomach, a lump in my throat and tears in my eyes.  I feel pretty helpless.  Yesterday I spoke in church about the Resurrection.  Talk about a tough subject for me right now.  I believe that Christ was resurrected on the third day.  I know that we will all be resurrected.  I know that if I continue to put my trust in Him and place my troubles and concerns and His feet that He will help me through whatever may come.

Our Latest Check-Up

     Mia had an appointment on Wednesday just to check her numbers again.  They have fallen more.  Her numbers have been steadily falling since about the first of February.  We thought maybe it was just a little cold or virus or something.  But her Neutriphil count is at 420 which is very low and makes her nuetropenic. Which means we can't take her anywhere unless we absolutely need to and then she has to wear a mask.  Her hemoglobin has also been coming down and is now at 8.6.  She may very well need a blood transfusion soon.  And last but not least her platelet count is down to 20.  It was at 34 last week.  If it gets much lower she will also need a platelet transfusion.  After talking with the nurse practitioner we made another appointment for next week to check counts again.
     A couple of hours later I received a call back from her letting me know that she had spoken to Mia's doctor, Dr. Camillo.  We still go in next week but if her counts don't look better she will be having another bone marrow aspiration.  Asked the nurse what they would be looking for and her answer was evidence of relapse or anything else that might explain why she is not doing well.  I reminded her that the two previous bone marrows should nothing even when we knew that Mia had cancer.  So I am not sure how I will feel about the results of the bone marrow.  I don't know if I can trust a negative answer.  The nurse was also in contact with the doctors at Primary Children's and they have ordered additional bloodwork to test for infections or viruses that may have reactivated in her system.
     I hope it doesn't take too long long to find out what is going on.  The not knowing is so very hard.

Quick update on Mia

So I know it has been forever since I last posted.  Mia is doing great.  She has started back to school half a day and now rides the bus home.  She loves being able to be back at Young Women's and school.  We still have a number of things to follow up with for her and it will still be a while before she is healthy.  She is considered in remission at this time and we hope it stays that way.

Christmas!!!

On Monday, Christmas Eve, we were very excited to find out that Mia was ready to come home.  It was a little unexpected but we weren't about to complain!  So we got Mia home and all settled in.  We had a very nice Christmas but didn't take many pictures.  We are worse now about taking pictures than when we used our big camera with film.

 Everyone is waiting to start opening gifts on Christmas morning.  Heidi, Jessica, Mia, Casey

 Allan and Andrew

Heidi with her two favorite presents, an American Girl doll and a new outfit.

Late on Christmas night I was preparing to give Mia one of her nine medications when I realized that I had misread the dosage on her med and I was giving her more than two times the dose.  As I was trying to decide if I needed to call the doctor I noticed that her oxygen saturation level was not staying up and that her heart rate while she was sleeping was at 160.  So I called the doctor and we headed back to the hospital at midnight.  The medication may have contributed, but also Mia's movement and activity during the day were probably just too much for her heart.  After another x-ray and echo and her condition has not changed.  She is on three to four liters of oxygen during the day and at night.  She is stable and we don't know when she will come home from the hospital this time.

Still Hanging Out At St Luke's Childrens' Hospital

Thursday night Mia had a hard time.  While she was sound asleep her heart rate kept going up.   She had a CT scan to make sure she didn't have a pulmonary blood clot.  There was nothing .  Later in the afternoon she had another echo to check her heart.  So far I haven't heard anything.  I am a little surprised that we haven't heard anything, but in this case we are assuming that no news is good news. On Friday Mia and I started to go for a walk only to have her heart rate get into the 170's before we had gone very far.  She was pretty upset because we had to return to her room.  Her room is boring she says.  Later that day the nurses got her a wheelchair. So Friday night Dad pushed her all around.  She really likes to get out of her room.

Better News

So Mia had another echo on Saturday.  That echo showed no change in Mia's Heart function.  It wasn't worse but it was no better.  So the doctors were not too thrilled.  Because there is no clear answer as to why her heart failure happened, the doctors had no idea what we could could expect as far as her heart recovering.  There was even some speculation that her heart function may never get better.  So Doctor Derek said we could expect to be in the hospital for two to four weeks, while we wait for the medications to give her heart a chance to recover from whatever happened.  In the meantime, they would continue to wean her off the milrinone onto other heart medications.  Once she was off the milrinone she would have another echo to see if there was any change.  This echo happened on Wednesday morning.  To everyone's surprise Mia's heart function had improved considerably!!!  It is not perfect but it is  close to what it was before her bone marrow transplant.  She is now out of ICU.  She feels pretty good, but gets very tired.

 Dec 11 2012 just after she was taken off the ventilator!

Thursday Dec 13 2012

 Decorating sugar cookies Jessica and Heidi.  I took some cookies to Mia in the hospital and she decorated them.  For some reason I can't get pictures off my phone! 

 Jessica helped me deliver some goody plates. It was so much fun to watch her.  She took the plates all by herself, wore the Santa hat, and told everyone Merry Christmas!  She had a huge smile!! It made my day!

Heidi's been in a choir at school.  She had a performance yesterday.  They all did great!!

Little Change

Yesterday Mia was put on a heart medicine called milrinone.  This medicine is supposed to help relax her heart and help it beat stronger and supposed to help dilate the blood vessels in the lungs.  We first thought that the lungs were the main problem causing some smaller issues with the heart.  Now the thought is that the heart is the real issue.  There is still no evidence of any infection.  The prevailing thought is that her heart failure is due to her chemotherapy regimen.  The goal yesterday was to get her off the ventilator.  It didn't happen.  We hope that will happen today.  She should be able to breathe without it, just on a nose cannula for oxygen.  However she is getting nitrus oxide through her breathing tube.  This medicine/ therapy is helping the pressure in her lungs.  Last night after the nitrus oxide was turned off her heart rate jumped up to the high 180's.  That is apparently considered heart failure.  So she went back on the nitrus.

Today she will start getting another IV medicine that should take the place of the nitrus.  After a couple of doses we will try turning off the nitrus and see how her heart does.  Mia is on a steroid to help with possible inflammation, a couple of antibiotics and an anti fungal just in case it is an infection, the milrinone, a feeding tube, her breathing tube with the nitrus oxide and oxygen.  She was able to have the catheter removed yesterday and so she was very pleased with that.  However since she is on lasix, a diaretic, she has to get up to use the commode regularly.  That is quite a production!.

The plan, as of this morning, is to continue to support her heart function with drugs.  She will be in the ICU until the end of this week at least.  Since we don't know the underlying cause we are in a waiting pattern.  The doctor does believe that there is no permanent damage to her heart and with time her body will heal.