Miracles 4 My'isha

#SmileThroughItAll

A Letter to My Daughter — August 3, 2017

A Letter to My Daughter

Dear Baby Girl…. My Life… My Daughter,

I want you to know that I wanted to have a baby girl so very much. I am so proud to be your mommy. I am so proud of all you have learned and all of the odds you have had to over come.

I have to apologize for a few things. I apologize for all of the times I have held you down. I am sorry for all of the times I let them poke you. I have let them cut you open on more than one occasion for a number of a reasons and for that… I am sorry. I apologize for the many nights we have had to stay away from home and the future nights we will miss in our own beds. I also have to apologize for every side effect as a result of the treatments I signed off on.

I have to tell you something else. There is nothing in this world I would not give to take your place. to take every surgery and drug and poke and sedation and test and cancer. I would gladly take it all from you. Everything that I have done… that I have tried to do… that I will try to do… is all to give you a happy healthy life. However, I am not sure if I am being selfish in putting  you through any of this nonsense to keep you with me.

I want to play make up with you for as long as you will let me. I want to carry you as long as you will let me. I want to cuddle with you more often and for as long as you will let. I want to watch you grow-up. I want to help you with your homework. I want to teach you so much more and I want you to see so much more than we could possibly have time for. I want to hold you when you cry until I die. I want to hear you talk to me everytime your mad. I want to watch you play in the sand and play in the water and play on the play ground and run with me and climb with me….

I am writing you this letter to let you know that I am sorry for everything that has happened and for everything that will happen. I am writing you this letter to tell you I love you and I want you to be happy and healthy for as long as possible. Cheers to kicking cancer’s ass one more time ❤

Love, your mommy… your caregiver… your teacher

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Feb Scans: No Change… What Does A Mommy Do Now? — February 20, 2017

Feb Scans: No Change… What Does A Mommy Do Now?

Yet again… I am faced with the decision to disrupt our life and subject our princess to daily sedation for 5 days for 1-4 weeks in Denver. Her wrist still lights up hot, so the decision remains until the cancer is GONE… 100%. She is so happy.. she seems to be doing so well… I really am not in a rush to change our lives at this point to be quite honest. She loves going to school. She made it through a full week of school last week! Everyone is so happy to see her. To make it through this school year would do wonders for her mind and soul, as well as everyone in the classroom.

Quality of life for her brothers is important to me as well. I will have to make arrangements for 2 of my boys whether we stay or commute daily. We are talking about changing everyone’s lives even if just for a week. If we take anything less than 4 weeks, the intensity of radiation My’isha receives increases, in order to still be effective… another tough decision that will need to be made when the day comes.

I have to do a little more research on the effects of frequent sedations as well. I am concerned about sedating her daily for any extended period of time… especially after what happened during MIBG Therapy Feb 2016. It is scary to watch your baby’s vitals drop and not respond to her daddy’s yell. Especially when she is in a radioactive room with a THICK wall between us and a strict scrub-in/out routine. At some point someone has to say, “To hell with protocol I am saving this child!”… usually a parent first by the way. It is an intense and terrifying situation, and something a parent will never forget.

The issue with keeping My’isha on the routine, is the expense and struggle to get quality meds. A 3-day dose for My’isha runs around $50 at the local dispensary. Our city and state is “cracking-down” on patient home-grows and gifting laws this year which will SEVERLY impact poor patients and parents of patients such as myself. We depend on the ability to find growers and caregivers willing to GIVE AWAY meds and they rely on the community to be able to pitch in as they can and when needed. Unfortunately, that is a battle that will need to be won at the state level and then again at the city level. This is why I do what I do every day. Patients who cannot afford healthcare, and insurance, need a better way to heal and treat.

Radiation itself is the lowest risk treatment offered that will kill the cancer cells by mainstream treatments. I have to weight the pros and cons of each and compare…. anyone want to trade places yet? For a week? Its alright… I will get my break eventually…. hopefully it is a vacay while the kids are on vacay somewhere else… happy.. and healthy….

To chemo or not to chemo… that is the question. — January 2, 2017

To chemo or not to chemo… that is the question.

I have to be honest…. I am still on the fence about the chemotherapy. I am feeling good about our natural approach. I have been making changes and increasing her cannabis does. I am wanting to get more consistent with the baking soda and apple cider vinegar. There are so many ways to attack this… I am just not sure I am ready to expose her body to more chemotherapy. She is still so young. 

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My’isha with her legs up on her daddy after making a mess of the house on Christmas 2016. Just kidding about the mess of course.

So just to update those who do not know, My’isha has had a relapse of neuroblastoma in the same bone, same location it came back in 2015. This is just 6 months after ending 6 cycles of chemotherapy and MIBG therapy. We have a few options… more than we discussed in detail, but it basically boils down to 1 of 3 options. We can do radiation alone. Which is NOT a curative treatment according to our oncologist. Use chemotherapy along with the radiation. Which has a higher response rate, but may or may not cure the disease. Or we can go all out and use the same antibody therapy we used 3 years ago along with chemotherapy. The antibody therapy has the highest response rate. However, my daughter has serious side effects to the antibody drugs. They have had to stop the medication early in the past. I am not ready for that. So the debate is between radiation plus chemo or neither for now. If I choose to go with nothing for right now, we will come back for follow up scans.

I want chemo to be a 2nd choice…. AFTER the natural regimens, diet changes, etc. I have just started making the changes I should have been making months ago, so I want to give myself and her body a chance to learn how to do this naturally. I know the first relapse was because of failed conventional treatment. Is this relapse because conventional treatment failed as well? Or because I have not been utilizing the natural remedies correctly? Or because the natural treatments will not work for her? Or does none of it really matter because her body is going to create neuroblastoma cells no matter what we do?

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Waking up from anesthesia after bone marrow biopsies and MRI of wrist- Dec 16, 2016

To me… it begins with the food she eats that nourishes her body. I feel like that is the beginning. Taking a dietary/nutrition class will be next on my agenda for sure. I also know that we are surrounded by under-utilized natural cures and resources. So why would I force my child into a damaging treatment when there may be a less evasive way to handle this for now.

My’isha is genetically special. I feel she will need a cancer fighting regimen for the rest of her life to be honest. We need to figure out her personal healthy lifestyle and make it her lifestyle. This is a huge undertaking as a mother. Especially when cannabis is included in the mix. I am determined to have this all figured out for my baby girl sooner than later. This way we can work hard on helping other babies in a similar struggle.

I want to keep My’isha alive and healthy. How do I do that? Unfortunately, no one has the answer for that. We are thrown many treatment and therapy options. If the doctors don’t know, how am I expected to know?  Ultimately…  the decision for everything from what she eats to the treatment is left to me.

We have more scan coming up and possibly radiation and chemo depending on what we decide. To contribute to travel, food, and natural treatment costs not covered by insurance, donate HERE > Paypal.me/Miracles4Myisha

 

Chemo: pre-meds a cancer mom’s view — May 22, 2016

Chemo: pre-meds a cancer mom’s view

I have been away from the blogging scene for a little while. Life became a bit overwhelming when we found out the MIBG did not clear all of the cancer from My’isha’s lymph node.

That being said, we have finished 2 out of the 6 cycles of chemotherapy My’isha will be going through. She is getting Irinotecan and Temodar for these 6 cycles, and so far she is tolerating them both extremely well.

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Last day of cycle 2 and handling chemo like a champ.
I have some confessions to make. We started My’isha on CBD oils just before her MIBG therapy. We had to stop due to her being on a medical study, and we were cleared to restart after she had the final scans from the MIBG study. So we continued with the CBD through her first week of chemo. We have not restarted the CBD yet, but will be soon.

My’isha acts totally normal. You would never know that she has to take an oral chemo for a week and an IV chemo for 2 weeks. She has not changed since before starting the chemo. She has no nausea, no diarrhea, NOTHING! Even the doctors say she is doing amazing.

Everyday we have to go to the clinic, they offer to give her Zofran. I respectfully decline every time. The weeks that she has to take the oral medicine, I give her a dose of Zofran in the morning, in hopes it will help keep the nasty stuff down. Other than the 1 dose a day for a week every 3 weeks, there really is no need.

She was prescribed an antibiotic to help with diarrhea the crazy blow-out diarrhea the chemo is supposed to give her. I have given it to her maybe once, and her stools have not changed from her normal.

All children who take chemo have to take a medicine called Bactrim or Septra. It helps keep away a bacterial pneumonia chemo patients are more susceptible to. I had given her this medicine ever since she started treatment this time and I religiously gave it to her during her first bout with cancer. Funny thing is, she had a runny nose that I always blamed on the chemo. The doctors told me chemo could cause her to have a runny nose, so I really thought it was the chemo. I stopped giving her the Bactrim, mostly because I forgot(it is only a Saturday Sunday medicine). She has not been ill with even a cold since the last time I gave it to her.

Her oncologist also recommended that I continue giving My’isha an inhaled steroid since she has such over-active airways causing a simple cold to turn into wheezing and breathing treatments. I stopped doing that as well because she has been doing so well, I have a hard time giving medicine when she is fine.

So, I really am not sure what all of this means. It just keeps ringing in my ears that the medical industry is not in the business of healing, they are in the business of making customers. Do they give these medicines out of habit? Is there some benefit to them or the hospital for prescribing medications we do not need?

We should be on a LIST of medications going through this treatment based on the medicines they want me to give my daughter. By not giving her these medications, am I putting her at risk? Or am I putting her at greater risk when I give her medicine that she does not need.

The chemo has a purpose… the kill the hiding cancer cells. Putting more medicine in her body “just in case” sounds more harmful than good. I have all of the medicine and inhalers on hand in case things take a turn for the worse, but for now… they will sit in the cabinet with the Tylenol until needed.

 

MIBG Is Done, And We Wait. — March 17, 2016

MIBG Is Done, And We Wait.

Man, it has been a busy couple of weeks. Let’s see, last time I posted on her blog, we were still inpatient. We had endured our first night in the hospital.

My’isha did extremely well with the MIBG infusion. She had pretty much no side effects outside of the radiation she had beaming out of her and in being released in her bodily fluids.

The chemotherapy drug Vorinistat messed with her appetite and taste buds quit a bit and gave her an upset stomach. So we had vomiting issues with medications.

It was Friday night when things got really REAL.

My’isha went to fall asleep, and all of a sudden her oxygen levels dropped! Normally when you hear that beeping the hospital, its nothing. With her, she either pulled the pulse/ox off or is playing with her feet or something. This time, as I was walking out to get gowned up to check on her, other nurses were on their way to come in.

We opened the big lead door between our room and her radioactive room. I yelled her name… nothing. Her daddy yelled her name… nothing. At this point, I am getting ready nurses are getting ready to get in the room. Her daddy is yelling her name…. nothing. I rushed in the room and sat her up and rubbed her back and she stirred. She opened her eyes upset that we had woke her up.

She wanted to lay back down. I let her lay down, all eyes on her and the monitors….. and she de-stated again. Again, difficult to wake her. At this point, I am in life saving mode, emotions off, just logical thinking switch on. Daddy is doing the daddy thing for us for now.

So what is going on, right?

We also had to rule out the risk of seizures. Due to My’isha’s rare genetic situation, she is at a higher risk of developing seizures and the treatment can cause seizures. We were able to rule that out rather quickly.

If you read the last post, I talked about the sedation cocktail we had My’isha on to keep her from pulling her tubes and to keep her pretty still in her crib. We needed her to be pretty chill through this time until her radiation levels were low enough to remove some of the montiors and tubes. She was on a drip of Ketamine, and around the clock Benadryl and atarax. So, it could have been either one of those or the combination of the 3 over aperiod or 3-4 days that was putting My’isha into a deep enough sleep to slow her breathing to almost stopping and making her difficult to arouse.

Talk about scary.

Once we stopped the sedation meds, the real mommy daddy work began. She had been pretty sleep for 4 days, so now… at 2am-6am she was wide awake. She was playing and pulling on tubes. She was back to normal My’isha. Which was a problem for her safety because she could pull a tube connected to a central line or the catheter in her ureter. Which meant more work for mommy and daddy… and nurses and doctors.

It was always awesome to see the doctor storm in our room saying, “DON’T PULL ON THAT MY’ISHA!” to the TV. It was GREAT! Especially when My’isha was only just trying to get a pretzel from the bottom of the bed she had picked up with her feet.

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It was hard to tell what she was doing sometimes. She seems to be coloring and watching TV here… but what are her feet doing?

We were lucky that the dose of MIBG she received was so low. It left her body fairly quickly and her radiation levels were low enough to where she posed minimal risk to us. So, with the sedation meds turned off and My’isha wide awake at 2am, our shifts began. Daddy took the first shift and I tried to get some rest in case there was another emergency. Which there was… she threw up. Let me just say this, weak-stomach daddy’s have no place in the vomit world! Although by the end of the following day, he was cleaning vomit like a champ!

It was around 6am when he was finally able to get her to sleep and lay down.

Meds were due at 8am, which meant it was my turn. He had to go back to work on Monday, on top all of the weekend’s excitement, so the nurses and I tried to let him get as much sleep as possible. However, with the paper towel dispenser going off everytime someone came in or out, and the radiation meter beeping like crazy when someone came  in or out, the big heavy door moving every couple of hours or more, and My’isha’s monitors going off if she moved her toes the wrong way…. it was still difficult to get any sleep.

Her radiation levels were low enough the following day to remove the catheter. So that was a relief.

She slept through the night and took a nap maintaining her oxygen levels, so we were able to remove some of the monitors too.

It seemed we were on the upswing. The only things keeping us inpatient had been removed.

Monday was scan day and release day.

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My’isha thinks she is ready to go. Although, she is only going down for scans and she is putting the shoe on the wrong foot.

Stay tuned for the next post where I talk more about the MIBG therapy and scan day and discharge 😉 Thank you for reading 🙂

 

 

What will MIBG be like for My’isha? — February 26, 2016

What will MIBG be like for My’isha?

We had no idea. Not even the medical team knew what to expect. The MIBG treatment has been at the Children’s hospital Colorado for about a year and a half, so it is still fairly new. My’isha is the first child under the age of 10 to have this therapy done here. So knowing that she will need to be in a room, alone, with tubes and lines hanging everywhere, we planned for some sort of way to keep My’isha calm and preoccupied. However, being that she has sensitive airways and just getting over a cold, AND… she has an adverse reaction to versed, we knew we were going to have our hands full, and really have to try to think outside the box.

So, day 1 (yesterday) started of with line placements and such. We decided to give a dose of Ativan to see how she tolerates it since it is in the same family as Versed. The ONLY reason I even agreed to give it a shot, is because she was going under general anesthesia afterwards anyway. So, if she had a paradoxal reaction, they would just quickly sedate her. It seemed to me that the Ativan worked like it was supposed to. She was chill and very easily took the mask and went off to sleep.

I had to drive back home to try to make it to my A&P class, so I missed her coming out of the procedure. However, when I made it back, the story was that she was not handling the Ativan well at all. She pulled the NG tube out soon after she made it up to her room. She was upset and irritated. They stopped the Ativan, but she continued to be restless and hard to calm and fussy until almost 2am this morning.

So today, we decided to try something else. She is on a Ketamine drip plus Benadryl and Atarax. It seemed to be working pretty well, so we went ahead with the infusion of her MIBG. The infusion went well. There were a lot of people in and out of the room doing preparation and infusions and monitoring. She was very mobile and entertaining for the staff and I.

The nurses said the older kids just kind of lay there, while My’isha threw her noodles, dumped her pretzels, got twisted in her lines, had the doctor coming in to press play on her tablet, she called one of the nurses La-La which is what she calls my sister (in My’isha’s defense, she does kind of look like my sister), and hit the doctor with her empty chee-tos bag. The doctor said My’My  was so fun to watch, that she is calling the monitor they watch her on “My TV.” I love that the staff calls her My’My. I have met very few people that I do not like at this hospital, and most of them take pride in doing things the right way… my kind of people.

Anyways, so about halfway through the infusion, we had to get a little more protective. I now have to get 2 layers of gloves, 2 layers of booties, and a gown on to go in the room with My’isha. I can touch her to clean her or feed her, but I can’t hold her to comfort her. I have to watch her via a monitor and microphone that connects our rooms. There is a big lead door between her and I to protect me from the radiation she is releasing.

I have to wear protective gear to protect myself from my daughter.

Let me say it again. My daughter is so radioactive, that I have to take special precautions and put on special gear to be able to go into the same room as her.

She isn’t even the most radioactive child they have had to treat either. We are lucky, because she is so small, and the dose is so low, that the radiation levels start off low. Anytime I want to think about how hard this is for me, I am very quickly reminded of how fortunate we are.

So she has been resting since the infusion. I have been in 3 times at least, but only once to give medications and such. I will have to gown up and go in every 4 hours for medication and such until her radiation is at a safe enough level, which at that point, we should be close to getting home.

As you know, if you read our blogs, the waiting game is a cancer mom’s job duty, and the one that takes the most time and often times the most energy. So, all we do now, is wait. The infusion lasted about 90 minutes, followed by twice an hour radiation level checks, medications, and a whole lot of waiting. We have to wait for her radiation levels to be low enough for her to be home and around people without exposing people to radiation everywhere she goes.

Until then… we wait and watch. I do my best to keep her calm and happy.

 

 

Day -1… JUST KIDDING. — February 14, 2016

Day -1… JUST KIDDING.

No seriously, this was supposed to be Day -1. My’isha was supposed to start the Vorinostat and get her NG placed. It was SUPPOSED to be…

The same cold that tried to keep us in the hospital is pushing her treatment back a week at least because of the need for anesthesia during this treatment. They don’t want to have a re-occurrence of last week or compromise her immune system while her body is already trying to fight off a cold virus. At this point, we just have to wait for the cold to runs its course. This is difficult for 2 reasons:

A) My’isha already has a hard time clearing any sort of respiratory illness. We think this is likely due to her chromosome situation.

B) Sudafed and other cold medicines that normally would come into play to help control symptoms actually inhibit the neuroblastoma cells from taking the MIBG treatment. How Inconvenient, right?

So, the plan now, is to… well… if you follow our blogs, you probably have an idea…

We WAIT! I also do my best to keep her lungs moving and her airways clear. I will be on Pinterest looking for ideas. They also prescribed a nasal spray steroid to help with lung efficiency and of course, her inhaler and breathing treatments through the week. We will be back in Denver Thursday to check in and try to get this treatment thing going before the disease is able to continue spreading and worsen our chances of getting through this as easily as we are hoping for and anticipated.

This is the unpredictable world of childhood and any other cancer. It just really doesn’t seem fair. I mean, no one else in the house is sick. My boys all go to school and none of them have any symptoms at all. She hasn’t been to school in weeks because of her arm and everything else, so she couldn’t have gotten sick from another child. We had a blizzard roll through here. We didn’t leave the house most days, but we did have to get out in the cold. So I guess if it was the weather, then it was fate, and I can’t blame myself. I keep her bundled, but the truck doesn’t have heat, so that had to have been how she got her cold.

It really sucks, because we really want to get this all over with. It is a silly delay to have, but the procedure wouldn’t be worth the risk given her respiratory history.

To end on a good note, what we thought was going to be a hard week financially, actually began with some much needed donations. It really warmed my heart when my brother was able to contribute to our gas situation and some long time friends made an awesome donation to her entertainment during transit and while we WAIT! We also had a family member of her father make the FIRST contribution to Miracles 4 My’isha’s PayPal account. Which will be so helpful as well and very much appreciated. The outpour of offers to help have been so heartfelt and very reassuring to us. It is a weight lifted  of the many that we are feeling at the time.

We really appreciate all of the thoughts and prayers and support and donations. You can imagine how much it helps us get through the days knowing that we will be able to put gas in the car to get there and feed our family still. Please share this story, even if you have a cancer warrior close to you, and need to raise funds for them. I hope this story will enlighten folks that this life we live is very unpredictable. We can do our best to anticipate needs and events, but the truth is that cancer has its own programming to function regardless of its environment or other cells. Our lives, our schedules, our finances, our families, our children, our vehicles, school, work, EVERYTHING depends on what these cells do next.

We are hoping to get going next week with treatment, if not, we will have to redo all testing including scans before being able to proceed with treatment. We may have to consider a treatment for in the mean time in between time, but only My’isha’s little body will tell.

 

First fever with her new port — February 13, 2016

First fever with her new port

In my last post, My’isha had just got her port replaced and we had made it home.

We were all really tired. We just wanted to go to bed and start the next day. The only reason I checked her temperature is because my mom called and asked if she had a fever. Mother’s intuition doesn’t stop when your child has children. Sometimes she picks up on things I don’t, like this fever.

It quickly climbed to the magic 101, so I called the number from her discharge papers for the surgeon. Wouldn’t you know, it was a non-working number. So I had to call the oncology department nurses line. I knew that with a central line, we run the risk of an infection in the blood or in the line, so we would need to go the emergency room. I began packing our bags before the doctor even called us back. Not a problem right, just head back up to Denver around 9pm.

We were quickly taken back to a room, and we must have been SUPER lucky, because we had 2 nurses. They come in running…. grabbing the stuff for cultures and accessing her port. Of course they asked me for the size of needle for the port that she just got and I left the packet they gave me at home. So I really had no idea. I called home and had Mikey look through the packet, but of course the information card wasn’t filled out for us. So the nurses had to do their job and look in her records.

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I should have know something was up when nurse one asked nurse two if he feels comfortable accessing her port. He obviously had little experience, which came apparent when he didn’t get it the first try. The point of the central line is to avoid getting poked numerous times looking for a child’s vein. It defeats the purpose if you have to try more than once. Accessing a port is a sterile procedure, nurses use extreme caution when accessing a port due to the increased risk of blood infection. Bacteria that live just fine in your mouth, will kill you if it gets in your blood.

I was honestly surprised at how rough they were with a surgery site that was just done that morning, but they had to get the blood to check for infection, so I did what I had to do. I held her little legs and I talked her through the torture. When he was finally able to pull blood, he pulled the labs and was going to apply a new tegaderm directly to My’isha’s incision site where they had placed the port.

I told him he needed to put fresh steri strips back over the incision site. The tegaderm will pull of any scab or skin that is in the process of healing right off with it when they have to de-access her. So he asked for more steri strips from the other nurse.

My’isha is still being held down at this point. Through difficulty getting her accessed, the nurses forgetting tubes, the lack of compassion for my daughter, and being held down through all of it, of course My’isha’s oxygen level started dropping. There was a 3rd nurse in the room to help hold. Rookie nurse of the year asked her to hand him an oxygen mask. HAND HIM the oxygen mask…. HAND IT TO HIM. In my mind, I am like, well… there go your sterile gloves. The thought must not have crossed his mind, because immediately after opening the bag and placing it by her head, he tried to continue doing with he was doing with her open accessed port! May not seem like much, but basically he was going to touch an open gateway to a major artery pretty close to my daughter’s heart. Needless to say, I caught him before he touched her. So… at that point… he was stuck… one hand on her accessed port, and the other hand is now contaminated and cannot come near the site.

We had to wait for the other nurse (must be the mentor nurse in this situation) to get his gloves on to put the steri strip and dressing on. Guess what size steri strips he came back with?

THE THINNEST SKINNIEST STERI STRIPS HE COULD FIND. So he did a thin x-like cross before applying the tegaderm. UGH…….

 

I was just ready to get upstairs the oncology floor where the nurses know what they are doing. My’isha and I both fell asleep in the ER room before our room was ready upstairs. You should have seen the nurses and CA when they saw that dressing job she got downstairs. I told them about our port access experience, and they were all speechless. We tossed around the idea of changing the dressing again, but it really would have likely done more skin damage than just leaving it alone to only be removed once.

So My’isha was able to fall asleep pretty quickly. I on the other made my bed by the window where I used to sleep, but I felt so far away from her. It didn’t feel right. I didn’t want her to wake up and not be able to see me. So I slept in the chair beside her.

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Awake a couple of hours later…

 

The plan for the day was:

  • redo her EKG because the waves were a little too long to qualify for the MIBG treatment study
  • redo her chest x-ray from the previous days port placement surgery to check on the cloudiness in her upper lungs
  • monitor her fever
  • monitor breathing and O2 levels due to issues through surgery and then down in the ER

Once the tests were complete, we waited for results. Her fever went down quickly after the Tylenol and did not come back.  Her breathing was a roller coaster and much more complicated…

The chest x-ray showed good improvement over the previous day and her lungs sounded clear to every person who listened to her. However, her oxygen levels were very inconsistent. She was fine when she woke up in the morning with very low blow by oxygen. I turned off the oxygen around 9 I think it was, because she hadn’t been using it. She was staying in the safe range, until the doctors came around. Then she would dip from time to time throughout the day. She would recover her oxygen levels on her own, but the dips…. the dang dips in oxygen level just keep everyone on their toes.

They brought her a pinwheel and a harmonica to blow to help exercise her lungs. They worked wonders! Until she stopped…. then sometimes her levels would fall right back down again. Sometimes her levels would fall and rise again without her doing anything. I sat her bed I propped her pillow, we sang, we stretched… anything I could think of to keep her levels up.

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Through all of this, I began to notice, how much of a waste of time it was being there. Her lungs sound good, her chest x-rays look good, she is eating, drinking, playing, peeing… the only thing holding her back were the wires for the monitor.

As it got into the afternoon, talk was it looked like we were going home that day. The nurse even popped her head in to tell me when we would need to be back on Monday. But 4pm, 5pm came around, and no one had said anything. At that point, I knew we weren’t going home because we couldn’t keep her oxygen up.

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I began to get upset. I told her daddy and my mom that we weren’t coming home. The sunset seemed to be calling us home, and the more I sat there watching the stupid blue line on the monitor, the more I wanted to leave. I was driving myself crazy trying to make My’isha take deep breaths and all these breathing exercises just to keep her oxygen level from dropping at all. KNOWING she just has a freaking cold!

So, the next time the nurse cam in, I stopped her at the door and asked her what I needed to do to leave. I told her was pointless for us to be here. I told here they weren’t doing anything for her. She told me she would talk to the doctor. An hour later, she came in to tell me the doctor will be in after she gets done with phone calls and such. During the time I am waiting for the doctor come in, I know how I get when I am upset, so I decided I better write down the good points and read and reread the patient rights.

The doctor came in probably another hour later, and asked how I thought My’isha looked. To which I replied, she looks good. She asked if we were ready to go home. To which I replied YES!!!!! I was so happy… she wasn’t going to put up a fight. She was really going to discharge us after 7pm! Right after shift change and everything!

It took another hour to get all of the paperwork together, but My’isha was in the wagon along with our bags and we were ready to go! I text my mom to let her know we were on the way to surprise the boys.

AND THAT WE DID!

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Always remember to stand up for yourself and your kids. If you know… then you know. You are your child’s advocate! Hopefully I prevented an infection. Hopefully I reduced the damage to the incision site. The icing on the cake was My’isha getting to sleep in her bed another night before she goes in for treatment next week. The sprinkles were I got to kiss my boys goodnight and cuddle with my love. We made it home. It was late, but we made it home. It was a LONG 2 days…. but we made it home to our family.

If there is anything you can do to help with expenses over the next 6 weeks, it will be greatly appreciated. We have a tough and busy treatment schedule coming up, so any little bit will help.

Port Is Placed And Ready For Treatment. Or So We Thought… — February 12, 2016

Port Is Placed And Ready For Treatment. Or So We Thought…

This is officially My’isha’s second port placement. She has had numerous broviacs due to complications and breaks, but the one port she had lasted the entire treatment last time. Surgery is never fun and anytime you are dealing with accessing a major artery, especially so close to the heart that distributes blood throughout the body. An infection would have found its gateway to the entire blood supply through the heart. So caution and safety and microbiology is very important in this story. Continue reading for the port placement story. The second part of this ordeal will be following soon. Thank you all again for your support. IF you are able to help financially in any way, please contact us for info. Thank you so much for reading.

ANewKindOfMommy

My’isha got her port placed this Tuesday. We are not new to this procedure at all. This is her second port, but she has been though at least 5 central line surgeries. The problem we came into this procedure with was a runny nose. That runny nose was the beginning of trouble for us.

She went back for her procedure as normal. I notified everyone I talked to about her runny nose before the procedure began. We went for the procedure as normal. The first call I received was to ask if they should leave the port accessed, to which I answered no if they were able to pull labs. Her daddy and I had to go up for training, so my mom stayed and waited for the nurses to bring her back once My’isha was awake enough to leave.
The last time she had anesthesia, it took a little longer than normal for…

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The waiting game: a cancer mom’s job. Updates: side job. — February 3, 2016

The waiting game: a cancer mom’s job. Updates: side job.

The job of a cancer mommy is never easy. Stop by http://www.anewkindofmommy.wordpress.com for some posts from a mommy who knows first hand.

ANewKindOfMommy

The life of a cancer mom consists of so much waiting…. We sit in waiting rooms and then go back to dr rooms to wait. I guess every every parent has to go through that wait when they take their child to the dr office, or urgent care, or the emergency room.

We also have to wait for scan time, wait for results, wait for procedures to be done, wait for our baby to wake from anesthesia, wait for blood counts to come up, wait for radiation levels to drop, wait for nurses to come assist, wait for the schedulers to call with your schedule, wait for the dr or nurse to call with answers. The waiting game is OUR job.

We do our best to pass the time. That is the easy part. Keeping our mind off the situation at hand or letting it not affect us “on the outside”…

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