Miracles 4 My'isha

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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.

 

 

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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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