Racking up frequent stay points at the hospital!

Sinatra riding the halls with IV stand in tow.

We have started our first week of the new phase of treatment called Interim Maintenance, which will take place in the hospital.  The expectation was set that this could be anywhere from a 3 day stay to a week.  We of course never plan on a 3 day stay and always assume a full week.  

The week started on Tuesday when we arrived at the hospital around 8:00 for admissions.  Once we got up to our room we then waited until about 11:30 for our lumbar puncture procedure.  Once that was done we started the seemingly forever wait for our high dose methotrexate treatment to start.  To start the high dose methotrexate Sinatra first has to hydrate over IV for 6 hours prior and then her urine has to show certain criteria in a test before she can start.  It seemed like forever but we finally started the high dose methotrexate at 10:00pm Tuesday night.  This chemo  runs for 24 hours and this first dose went very smooth. Once the chemo has completed the nurses start giving a follow up medicine (Leucovorin) at specific intervals after the start time of the methotrexate to help the body get rid of the chemo.  We can't leave the hospital until her methotrexate level is below .01 which is on average around the 72 hour mark. We also must monitor the methotrexate level and be very mindful of when the Leucovorin is given because if the methotrexate levels don't go down in a steady pace it could cause some serious side effects.  This is the purpose of us being in the hospital the entire time.

As always things were going smooth and then we are dealt another blow.Thursday afternoon the Dr's noticed that Sinatra's labs came back with a low blood sugar.  After research they saw that her blood sugar had been low multiple times over the past few months.  This was significantly low and we were surprised that she showed no side effects (tired, confused, seizures).  Sinatra's blood was 40 and below many times and the normal level should be above 60 (however they want to see above 80).  Now we had to start testing to see if there is organ issues that are causing this low blood sugar.  It also would make for an interesting night because we now had to wake up every 4 hours to prick her finger (the same as someone with diabetes) to test her blood sugar.  As long as she stayed above 60 throughout the night we would be considered ok.  Luckily she would stay around the 90 mark which means she did great.However to be sure we are being sent home with a bold sugar test kit and a emergency glucose pen in case she goes into a seizure. 

Well Saturday morning as we were getting discharged (literally signing discharge papers) we got more roller coaster news, the Dr. said that Sinatra needed a transfusion which means we need to stay there another 4 hours minimum.  In the grand scheme it is not a long time but when you are preparing to go home and you start the process to be told you need to stay longer it is pretty deflating.

Anyway we should be back in the hospital in 10 days  or so for round number 2 out of 4.

The results are in!!!

Wow what a long weekend that was. After our procedure on Friday we just had to wait until we got word of Sinatra's MRD. It was a gut wrenching wait. While we were waiting we would start talking about scenarios and plans of how we would deal with certain results knowing that as a very high risk ALL patient, we probably wouldn't be a 0 MRD.  On Tuesday we finally got in touch with our case coordinator who had the results.  We wish we could express the overwhelming joy when she said '0'!!!!!  We couldn't believe it that Sinatra got a 0. This means that Sinatra is in remission and there are less than 1 out of 10,000 bone marrow cells that are leukemic.

This was so amazing and we decided that it was time for a night out to celebrate. We truly needed the stress reliever of a good night out with plenty of cocktails!!

Having our family meeting with Dr. Kirov,
Amanda our case coordinator and a cake
'Celebrating Sinatra's 0 MRD, Thanks CHOC'

On Thursday we had our family meeting with Dr. Kirov at the clinic to discuss the results and talk about next steps. We decided that it was time to celebrate with the Dr's and nurses that helped Sinatra hit this incredible mark so we brought in a cake to celebrate. Our meeting also helped us enjoy the rest of the day Thursday which happened to be our 4 year anniversary.

Even though this treatment and struggle is not over and we are far from being out of the woods, this was a huge milestone for all of us.

We are now on to the next phase of chemotherapy called Interim Maintenance. This phase will be 63 days and consists of a 3-5 day visit to the hospital every 14 days for chemo.  The chemo that Sinatra will be getting is call High Dose Methotrexate and takes 24 hours to infuse over IV.  There is also special protocol that needs to be followed while taking this drug due to the  toxicity of it.  Sinatra's stays could be longer or shorter and all depend on how quickly the blood tests show that the drug is out of her body.

We get started next week on Tuesday and we will keep you posted on how it goes.

Now we wait...

Hanging out at OPI

On Friday, 4/11 Sinatra had one of the most important  and anticipated milestones in her treatment plan, her Day 56 Bone Marrow Aspiration. Everything with the procedure went well and when we had labs drawn that day we also learned that Sinatra has low hemoglobin and would need a blood transfusion. We also learned that she also has a super low, zero, ANC again so she is neutropenic which means we are in isolation once again until her counts rebound. The doctor believes that this is normal because of the intense chemo she had this last round but its just so frustrating because we keep hoping that things will just start going up. She seems so normal right now; happy, eating well, sleeping great, sometimes it just doesn't make any sense at all.

Now we wait for her Day 56 MRD results...

The MRD will help us understand how much minimum residual disease (cancer) is still in her bone marrow. At this stage if it is more than .01% we are told that we will need to consider a Bone Marrow transplant. We are hoping and praying that it will be .01 or less which will allow us to continue doing chemo and complete our road map over the next 20+ months.

We can honestly say that the waiting for this result has proved to be the most anxious we have ever been in our lives so far. We have thought about the times when we have waited for things before, like waiting to find out if the loan for our house got approved,  or waiting to find out if we were pregnant, or waiting to deliver our daughters in the operating room. Compared to waiting for Sinatra's MRD results, waiting for those things seems easy now and we will never look at these 'life events' the same or with the same level of anticipation.  Nothing has ever had us this stressed, this anxious, killed our concentration, affected our sleep, affected our dreams and had us to tears just because.... This is more than anxious and we aren't quite sure how to describe it.

We hope to get our results Tuesday or Wednesday this week and we have a tentatively planned Family Meeting with our doctor on Thursday to discuss the plan for going forward.

Please continue to think about us and hope that the cancer is gone. We will update you soon.