Allie’s Story

Site created on September 2, 2018

The summer of 2018 started out like all summers do with swimming and plans for great adventures, however, this one was not to meant to be.  Allie  was tired and out of sorts for most of the summer and we honestly suspected that she had been exposed to Mono at some point.  On August 2nd, the doctors ordered some blood work, including a CBC.  Much to my surprise and horror her WBC (white blood count) came back very low, so low in fact that we were told to go right to the ER.  My immediate thought was of course cancer but based on all of her other symptoms (or honestly lack thereof) that was not a concern from the doctors perspective.  She was admitted and spent one night.  The prevailing thought was that she had been exposed to a virus and her body was struggling to fight it.  We scheduled a follow up appointment for August 15th with the hematologist.  At that appointment her counts had not changed at all so a bone marrow biopsy was scheduled.  Once again they did not suspect leukemia, but instead we were introduced to the possibility of bone marrow failure.  Due to her low WBC and ANC (absolute neutrophil count) we were advised to not have her start school and to keep her home until after the biopsy.  Her biopsy was schedule for August 29 and the two weeks between were incredibly difficult.  We were told that if her temperature was above 101 she had to immediately go to the ER because her body was essentially unable to fight any infections.  A week before the biopsy she started running low grade fevers that would wax and wane.  She would hoover around 100 for an hour and then go back to 97 only to rise again a few hours later.   She was so exhausted she could not do anything but lay in bed and often had difficulty walking around the house for more than a few minutes.  At this point I knew deep down that no matter what we had been told that it was leukemia.  The morning of the biopsy I took Allie to the hospital where she was sedated for the procedure.  She wound up having a reaction to the anesthesia which forced us to remain in the hospital longer than expected.  As we were waiting for her to be cleared to go home a team of doctors walked  in and at that moment I knew before anyone spoke.  Sure enough despite what we had been told she did in fact have Leukemia.  

Newest Update

Journal entry by Meredith Zuppo

I am sorry for such a delay in updates but the last few days have been filled with lots of emotions that I had to work through and help Allie work through as well.  As you know we were in the hospital for a fever and low blood counts with the prevailing thought that it was some sort of minor infection.  Monday she looked great and other than the fever you would never know that she wasn't feeling well. That night she was in horrible pain in her back and in fact was in so much pain that they had to give her some oxycodone to allow her to get comfortable to even sleep.  Tuesday morning she woke up and immediately threw up.  She was given some zofran to help ease the nausea and she was able to go back to sleep.  We also had to go get x-rays on her knees because good old insurance would not cover an MRI unless she had x-rays first.  When we came back from her x-rays she said she was hungry and I know that in the past she has been sick when she is too hungry so I ordered Panera and she ate some tomato soup.  We started to play cards after lunch and she proceeded to throw up at least 5 times while playing cards.  It was actually pretty comical to watch her throwing up and still trying to play cards.  The zofran didn't really help with the nausea so she was given some Ativan which apparently helps with nausea too.  At that point we were told that they wanted to get x-rays of her back and hips as well due to her intense pain the night before.  The Ativan literally knocked her out and she slept from about 3 pm until Wednesday morning. 

Wednesday morning the team came out to talk to me privately, her counts were continuing to fall despite not having received any chemo since Thursday night, she had pain that was spreading throughout her body, and unexplained fevers - I assumed they were going to suggest a fungal infection, however, they were thinking something much worse - a relapse of her leukemia.  As you can imagine I had a mini breakdown right then and there yet I was not surprised either.  Allie has not been able to receive the treatment that is known to work for leukemia other than the first 8 weeks of her treatment due to her infection and subsequent health problems and secondary fungal infection last fall.  I asked her team what in the world would we do?  Her body obviously can not handle the normal treatment.  They all assured me that there are other options and that we would explore everything if we came to that point.  I could have asked a million what if type questions but decided it didn't really make sense to do so until we had information one way or another.  Unfortunately she had woken up feeling better that morning and had already eaten so she could not be sedated and receive a bone marrow biopsy that day.  Instead we had to wait.  While we told her that we were going to do a bone marrow biopsy we did not explicitly tell her why, but of course she is too smart and figured it out.  That afternoon the resident came in to discuss her x-rays.  While her back one didn't show too much her knee ones were not pretty.  They both show some serious AVN in her knees along with what appear to be some fractures.  They decided to put her on limited to no weight bearing, meaning she can walk small distances but that is pretty much it for right now until we get some answers.  Needless to say Wednesday was a very long day and night. 

She was scheduled for sedation Thursday at 12:30 pm and her biopsy.  Thursday arrived and due to some emergencies in the sedation room we were pushed back a few hours.  At that point I was so nervous that we might not get answers that day but her oncologist assured me he would do everything he could to get some preliminary results that day.  As soon as they had her biopsy the oncology team personally walked it over to the pathology lab to look at the slides themselves.  A few hours later they came into her room with smiles on their faces.  The preliminary results from the bone marrow aspirate (the fluid from the marrow) showed only 2% blasts which is within normal ranges.  They were cautiously optimistic that she had not relapsed.  I can not tell you the relief that I felt at that moment.  In other good news she had also not run a fever at all that day.  Her doctor said that as long as she remained fever free we could go home the next day!!  WAHOOO!!!  With this news we then had to talk more about all her pain and the AVN that appeared to be throughout her body.  Her doctor said he was going to reach out to orthopedic surgery Friday morning to have them look at her x-rays and advise what types of MRIs should be done.  

Friday morning arrived and Allie had remained fever free so I woke up excited that we could likely be going home that day.  When I walked out of her room around 9am I saw her doctor and excitedly asked if we could go home.  He said he was thrilled about her fever but that her counts had go down yet again, and her ANC was only 54.  That is very very low.  He did say though that he knew that John and I would not do anything crazy with her and would bring her back at the slightest sign of anything being wrong.  He really wanted to have the results from the actual bone marrow (the solid piece from the biopsy) because it is possible that the results from the aspirate were skewed if the sample was diluted from standard red blood cells.  The problem was the pathology lab was saying that it might not be back until Tuesday since they didn't get it until late on Thursday which of course was out of our control.  He said he was going to fight hard to get answers before Tuesday.  They finally said they would have it evaluated by Saturday and we all agreed that it was best to go home.  If the cancer was in fact back, at least Allie and I would get to go home for a little bit and see John, John, and Brielle.  Her doctor also was able to speak with ortho and they want to have MRIs done of both her shoulders, hips, and knees and in order to do so she need to be sedated since the scans will take around 6 hours.  They are scheduled for September 25th and she will need another COVID test a few days before that. In the meantime she can not go up and down the steps and is still on minimal weight bearing, which means she is back to sleeping in our master bedroom on the first floor.  We came home Friday afternoon but John and I were still worried about the call we would receive Saturday at some point.   

Saturday morning, around 10:30, I got a call from the hospital.  My stomach dropped as I nervously answered it.  The results from the actual marrow were back.  95% of her bone marrow is normal recovering marrow and the other 5% is not.  That remaining 5% is being evaluated at a higher level to see what it looks like on the cellular level and I am sure other tests etc but those results will not be back until Tuesday.  Her doctor felt the pathology team is doing the right thing in looking at those cells closer but he feels confident that if her leukemia was causing fevers, pain, and low blood counts that there would not be 95% recovering marrow.  They are also testing her marrow for a few different viruses that can be treated with IVIG to help her immune system rebound but those have not yet resulted either.  At this point they all feel her body is fighting some sort of virus and while John and I do feel relieved I also know that Allie throughout this entire journey has never fit into any type of mold or standard and always been an outliner so I am waiting for final results before I celebrate.  

Since we have been home thankfully she has not had a fever (obviously or we would be back in the  hospital), but the poor thing is in a lot of pain in her back, knees, and shoulders.  She is very worried about what will happen and what the scans will show.  We have assured her that it is better to know than to not know, because then we can start to treat it so she can get better.

Several people have reached out over the last few days and I am sorry - I have not meant to ignore anyone but this has been so much to process that I just couldn't respond.  Allie's little body has been through so much, has so much more yet to go through with the AVN, and the thought of a cancer relapse was almost more than I could bare.  I literally did not have it in me to respond to anyone until today.  I want to as always, thank everyone for all their thoughts and prayers; they are what keep us going.  Knowing that we would have such amazing support from everyone is what helped us navigate the last few days.  

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