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February
11
2019

February 11, 2019

Eleanor had physical therapy today, which went great we will still be going ever two weeks. These neurological problem from chemotherapy are literally the worst. 

Eleanor also had a lab draw, and doctors appointment.
Her labs came back great. WE WILL BE STARTING ORAL CHEMO AGAIN!  Her neutrophils are 1,380, hemoglobin of 11.8 and platelets at 317,000. 
This means that Eleanor's born marrow was working and fighting off the infection like she should which is great news. She is finally on the up and up from RSV. 

We will have her normal monthly check and with a spinal and chemotherapy next Tuesday. Until then we are going to enjoy some snow here in Minnesota.
February
5
2019

February 05, 2019

Eleanor is looking good, still fighting with the nasty cough. But other then that our doctor's appointment and lab draw went great today! 
Eleanor neutrophils have now gone from 330 to 580, so she is on the way to having some immunity. Her body is fighting this infection like it should. 
Her kidney and liver levels are also looking good. 
She will still be on chemo hold, so her body can have time be recover and come back. 
We will go back in this next Monday for another lab draw and doctors appointment. 

February
5
2019

February 04, 2019

Well I've really been slacking with the caring bridge updates, we've been updating Eleanor's Facebook page which is a little easier for me. Her page again is Eleanor's fight. 

But other then that... A very long over update on Eleanor. 

Eleanor has officially started the first phase in maintenance, which means we have only visiting the doctor's once a month for lab draws, chemotherapy, and doctors appointment. It was been great being home as much as we have. 

Eleanor has been doing great with medicine, and eating, drinking, and everything she should be doing.  

She recently went and passed her preschool screening, so we will be hopefully enrolling her in preschool in the fall. 

Eleanor has been having side effects from the vincristine chemo, which has had doing physical therapy twice a month, and wearing AFO leg braces for 4 hours a day to help with the nerves that have been being destroyed with chemo. 


Just this last Saturday we found out Eleanor has RSV, a very tough respiratory illness she is fighting. We took her in the ER for a blowing blood vessel in the eye from coughing so hard and they tested for for everything from whopping cough to the flu. It came back positive for RSV, we also found out that her immunity level has dropped very low, which is not good for her to fight this off. Her neutrophils were 330 which also means they have put her on a chemo hold her body can recover some. We have been doing all the home remedies for RSV, and nebulizer treatment with abulteral sulfate every 4 hours. Eleanor has remained fever free so we are home, keeping her as comfortable as possible. We go back to doctors tomorrow for a lab draw and doctors appointment. She will also have a physical therapy appointment tomorrow. 

Doing a little neutrophils dance, so Eleanor isn't neutropenic anymore, and we have some immunity to fight this nasty nasty illness. 

November
20
2018

November 20th, 2018

Day 4 inpatient:

Eleanor had a lab draw this morning. Her hemoglobin has increased to 8.9 her platelets have come up to 189,000, and her ANC is 100!! Which means we are going in the right direction now.

When Dr Rodriguez came in today, Eleanor Oncologists. She said she wants us to be home as a family for Thanksgiving. So if Eleanors numbers are still coming up like they should by Thursday morning **knock on wood** we could possibly go home even if her ANC isn't 500. This would be truly amazing and we don't get to spend many holidays or birthdays together as a family anymore.
Prayer we keep this numbers moving up, and Eleanor keep running around and her spirits are high the doctors say she looks really good.

For her bottom we have started her on a topical cream call nefidepine, and also will be starting her on another topical cream that is aquaphor and morphine mixed together for her bottom we will rotate the application every other throughout the day so that way her bottom is always covered with something. But today she did go into the bathroom and she went number two all by herself without any screaming or crying. So these topical creams must be doing the job.

We also were worked with physical therapy today, Eleanor has been walking on her toes a lot which neurological problems is a side effect of vincristine chemotherapy that she has received a lot of. So tomorrow morning we're going to have the brace specialist come in and determine if Eleanor will need afos to help her build strength back in her ankles and legs.

November
20
2018

November 18th, 2018

Day 3 inpatient:
Eleanor is doing well, a little irritable but another then that she is good spirits. Not much as changed we are still waiting for her numbers to come back up.

We did not do a lab draw today, but they will be doing one tomorrow.

We also now are thinking Eleanor has hemorrhoids in her bottom and she actually ended up busting one, and plenty of blood came with it. There is nothing the oncologist can really do for them. We are going to be talking with GI about them more.
November
20
2018

November 17th, 2018

Well Eleanor spiked a fever around 4am this morning, so we called her doctors as we are supposed too and they wanted us to come in the Emergency department, we are currently sitting in the ER. They have done blood work, and blood cultures. Eleanor's lab work came back with undetectable neutrophils, which means low immunity and fever we are checking into hotel St Mary's for awhile. We will talk with the Oncology team at rounds, but for now they will pump her with antibiotics, and fluid.

November
20
2018

November 13th, 2018

Eleanor has a dietitian, lad draw, doctors appointment, and chemotherapy today. But this is very special chemo today it was Eleanor's last chemotherapy of the phase delayed intensification!!

We officially start maintenance!!!!! Which means hopefully visits every 3 weeks if everything goes smooth and as planned, but come on we're talking cancer its never easy going on us. Eleanor will be receiving spinals with Intrathecal chemotherapy, oral chemotherapys, and steriod pulses. We will find out more this next Tuesday, when we go over her protocol calendar.

Today for Eleanor's lab draw we went very well, her numbers came back all about where they should be. But also it's reassuring knowing they are on the up, and not back down.

We ended up having a very long day when we showed up to receive her chemotherapy and had to wait 2 hours for the drug to show up, not the greatest of times. But Eleanor got a great nap in while we waited. Eleanor did great though receiving her chemo.
November
20
2018

November 12th, 2018

Sorry I haven't gotten to the update:
But here it is...
Eleanor have a lab draw yesterday morning, her hemoglobin came back at the same at 7.5 that it was at 4 p.m. the day before, and her platelets actually came up to 60,000 the day before at 4 p.m. they were at 36000. so everything came up as it showed she did not receive any transfusions yesterday but her neutrophils did drop down to 600.
So she is neutropenic with very little immunity. We have doctors appointments tomorrow on November 13th. We are meeting with a dietitian, to discuss more about Eleanor's appetite and maybe figure out ways we can get her to want to eat more. They also have a lab draw and will meet with the doctors after. she then is scheduled to receive vincristine chemotherapy which is a 15-minute IV infusion.

If everything goes as planned we will be going after all of our appointments, to get all of the stuff for her brother turning 1 on Wednesday November 14th. She's so excited to be out of the hospital, to blow out the candles on his cake and help him open his presents.

All in all the last couple days Eleanor's energy and all around moral has definitely spunked up.

Just pray pray pray that she has no major count drop in her blood drive tomorrow it will technically be the same amount of hours that they drew and her blood instead of major count drop, so hopefully her number is dropping may have just been the chemo that she received and just wiped her out completely and it's something that maybe usually doesn't happen but it happened to Eleanor. If her numbers are still up tomorrow during her lab draw they pretty much will come to that conclusion unless anything else odd is to happen.