The unexpected lung infection and being in the PICU

When you get a cancer diagnosis especially for the second time, you basically know what is laying ahead chemo, radiation, and surgery not always in that order but basically that is the structure of most cancer treatment protocols. Our treatment protocol took a while to fine tone before we decided Savannah was going to have her first Chemo treatment on March 16th, then she would start her five rounds of high dose radiation on her left tibia on March 24th roughly ending on March 2nd, 2022. That would give her 5 days to hopefully spend some time with friends and for our family to prepare for the major right femor surgery on March 7th. That was the plan.

March 24th, around 10pm Savannah tells me she is struggling to breath. Our pulsar says her O2 stats only 92

We Immediately call Aflac and bring her to childrens emergency department as her O2 drops to 87, where they immediately rush her into a trauma room.

After spending 5 hours in the trauma room, they perform a CT-Scan that shows significant changes in her chest especially her lungs.

The first night/morning in the emergency room were scary, made even more so when they gave me the CT-Scan results and it appeared as if her cancer had somehow rapidly spread to her lungs and chest in a matter of less than 2 weeks. I will admit I was both devastated and confused by how rapidly her cancer had not only entered her lungs but the degree of which it seemed to be progressing. It took almost 12 hours before we was back upstairs with a bed in the Aflac (oncology floor), and her team came to talk to us. I however was given some hope back as they explained they didn’t think the changes to her ct-scan was cancer. The immediately thought was some form of infection though nobody knew what kind. With Covid being the obvious possibility they quickly ordered a complete virus panel, which felt like an eternity to get the results of. However every one was surprised to learn the only virus that Savannah was positive for was the Rhinovirus (aka the common cold). So we was able to rest a little at this point dad headed home to be with Christian and I having already been up for well over 48 hours by this point took my nighttime meds and went to sleep.

Taking some selfies with her new accessory

Cuddling with dad in our new room on the oncology floor!

Family cuddling before dad left 💜

I was obviously in a very sleep and extremely confused when our nurse woke me up to say that the PICU team was there to evaluate Savannah. What I didn’t immediately understand was that while Savannah was asleep her oxygen levels decreased significantly, and oncology had her on 8litters at 100% which was the max amount of respiratory support they could offer on the floor. Unfortunately it wasn’t enough for Savannah to maintain and because of this she needed to be transferred to the Pediatric intensive care unit (PICU). Once I wrapped my head around that and managed to get the majority of our belongings packed up and moved into our new room, I learned that they had already uped her support to 15 litters of a high flow (or humitified) nose cannula. Which at first Savannah was doing great on, at least why she was awake. Dad and Christian got to the hospital around 10ish and then Michelle mom’s amazing best friend even came to visit around 3pm. Unfortunately since Christian is not quite 18 he was unable to actually visit with Savannah so dad hung out with her why Christian and I got to spend some time together playing different card games. They had done a new chest x-ray which showed that the virus which at this point we was pretty sure was pneumonia was continuing to get worse, so they had her started on 2 separate antibiotics and steroids.

Savannah and Dad on day 1 of the ICU wearing the high flow nose cannula.

Savannah getting some love from Michelle why discussing boys, and just relaxing Saturday March 26th.

Michelle being the incredible friend she is offered to take Christian home with her and to church with her on Sunday, giving dad the rare ability to stay with us in the hospital. Something I am very grateful she did, because that night shortly after Dad had made the bed for me, and I feel asleep he woke me up to tell me that, Savannah while sleeping once again was unable to maintain her stats. The respiratory tech had already brought her up to 22 liters and it was insufficient to control her oxygen level and they were now preparing to put her on a Bipap machine which would deliver 2 different levels of aor pressure as well as force her lungs to stay open (at least that’s how I understood it).

Savannah with the Bipap she immediately was uncomfortable and had problems with finding the comfort position.

Savannah resting Saturday night February 26,2022.

Although I was not happy about the Bipap I was more scared when they explained that the next day Sunday (February 27,2022) they were going planning on doing the lung biopsy. This test which essentially had two separate parts was important because up to this point the broad spectrum antibiotics they had been giving was showing no signs of improving anything, and her lungs in fact was continuing to get worse. I was very much on board with the biopsy as I know the best way to treat her infection starts by being able to identify what it is. However it was the news that once they inserted the breathing tube for the test, they were most likely going to leave it in place. The reason being that her lungs desperately needed a break and a chance to rest. I think we were a little more prepared than most families because of the fact that Savannah was still intibaited following her open heart surgery in July, 2019. In fact she was awake intibaited with no sedation for roughly an hour after her heart surgery and she handled that amazingly holding both mine and dad’s hands and squeezing to answer questions which also kept her calm. However no matter how prepared you think you are, or what prior experience you have with seeing someone on a ventilator it doesn’t make it easier when you see your baby on a ventilator.

It is always gut wrenching to give that final kiss before surgery, or a procedure.

Dad and Savannah doing their secret handshake before we had to leave the room.

One more snap 🤪

Absolutely beautiful but so devastating to see like this!

Finally resting comfortably after being repositioned 💜🖤💙

We are now on day 3 of the ventilator, March 1, 2022. We so far have not got any results back saying what this virus could be, buy she is currently getting 3 different antibiotics, a anti-fungal, 2 separate types of steroids, as well as 150 mcg of Fentnol, and another medication to help her stay somewhat sedated. This lung infection has caused us to push back on all of her cancer treatments and we are not sure when she will be ready to begin those again. Today we are hoping for some answers to what the diagnosis is so we can start treatment for that specific virus. I am not sure how much longer she will be on the vent, but I pray soon her lungs will heal soon and that she can once again regain the strength necessary to continue to fight. Thank you to all of you who are praying for her, who have donated, and are sharing her story with your friends and family 💜 good night- NiCole (aka one over tired mama bear).

This is so hard!!!

I wanted this blog to offer a real honest insight into the world of childhood cancer so I am going to do my best to provide that, which is why I am turning to this tonight instead of my journal. I am sitting here having not slept much if any in the last 48 hours, at 11:30 pm because Savannah asked me to stay downstairs until she falls asleep. I am emotionally and physically exhausted though so it is not easy.

Today has been the hardest one yet this go around. We are now 3 days post chemotheraphy so her body is starting to react to the treatments, and unfortunately this time around its not just simple mild nausea. Savannah has been in a lot of physical pain everywhere in her left leg from dad giving her a shot last night that is suppose to help her body begin to reproduce white blood cells, that unfortunately was still causing a pain she described as burning . On top of that a side effect we wasnt prepared for is her muscles all seem to be flexing and tense causing her pain all over her body, as well as horrible stomach cramps that wrap around to her back. Although she would say worse than all that is the nausea, and mucusitis that has caused her to spend the majority of the time she was awake today with her head in a bag, dry heaving. It got so bad earlier that dad actually helped to force her to throw up, utilizing a toothbrush to push past her gag reflex. My daugter has always hated throwing up, when she got the flu in the fifth grade, she spent the night laying on our bathroom floor on a crib mattress crying “mommy make it stop, I don’t want to do this anymore”. I wonder if she truly knows how badly I want to make it stop, or take the pain from her.

I don’t think I have ever told anyone but I honestly believe that childhood cancer is worst for the parent then the child. I know she is the one going through the pain, and being stuck with the needles, but the heart wrenching, anguish of listening to your baby cry, and being helpless to do anything is truly gut wrenching. On top of that you as the parent are actually the one who signed the paperwork and gave permission for the treatment that is causing the pain. I know that in order to save her life, and to get to have many more amazing years full of happy memories we have to be aggressive in her treatment, and by being aggressive she is going to suffer but the alternative is doing the bare minimum of chemo every 21 days until the disease progresses. However knowing it, and actually having to hear her cry, or see her pain, and worse to listen to her say “I don’t want to do this again, I can’t, why me, what did I do wrong”. That is a pain that they don’t make a pill for. It’s worse for me because I don’t have dad here 24/7 to help and to remind me that this is all for a purpose. It’s just me and the kids one who is suffering, and one who is angry and shutting down.

I wish things were different because I can admit, the lonliness and the magnitude of the situation are overwhelming more often then not. However I dedicated the last two years of my life to healing from both Savannah’s first battle with cancer, and the subsequent and simultaneous demize of my marriage and destruction of my family. That I know by even sitting in the I wish, or I miss, or I need stage for too long can potentially throw me back into the devastating darkest deepest depression I never want to experience again. It literally took me almost four months to simply get out of bed, and leave the room. I cannot do that again, but damnit this is so hard! I would give anything in this moment right now to just be able to lay my head on his checst and cry in his arms. However that’s not going to happen and we are finally in a good place, that I am not willing to jeopardize that for anything. I keep repeating Jeremiah 29:11 in my head, desperately trying to hold onto the comfort that what we are experiencing right now is a part of God’s plan. I am by no means a good Christian and I will never claim to be, but I do belive everything happens because of God’s plan and that He has a reason and purpose for it all.

However that is hard to hold onto after you just spent two years healing from the situation that you are once again sitting in, the difference being now the cancer is more intense, and painful but greatfully in a position where there are multiple options for treatment a luxury the heart did not allow for. As well as I am doing it completley alone this time, well I did it alone last time as well but at least dad was in the house not down the road. I am also angry becasue I put in all that hard work to heal, and I finally started to feel true happiness and joy again, but only had 2 weeks of that before this new diagnosis. I wish I could understand the point of that, but again there has to be one. Well I am going to go check to see if she is sleeping and verify she doesnt have a fever, than I am going to head to bed. To cry myself to sleep, holding a sloth stuffed animal, and a body pillow. Then tomorrow I am going to wake up put a smile on my face, and face another day, becasue ultimately Savannah deserves me at my best, as she is already giving this everything she has, and I owe it to her and to myself to keep moving forward.

Thanks for letting me vent, eventhough I doubt anyone will read it, since I have not even successfully finished setting up the site, or published in anywhere but one facebook post. Goodnight friends. 💜

NiCole

How we discovered a tumor in our 13 year old daughter’s heart. Which was soon discovered to be the first case ever of a child with Leiomyosarcoma of the heart 💜

Our happy family at the beginning of summer in 2019.

In July of 2019, I would have described our family as a typical family in the since that we had two teenagers, as a couple we had been married for just shy of 18 years. Enjoying the summer between or son Christian’s first year in high school, and our daughter Savannah’s last year of middle school. Our family was built on the ability to overcome obstacles and to face trauma as prior to childhood cancer, we had already faced many battles including dad’s multiple combat injuries that resulted in his 2012 medical permanently combat disabled retirement from the U.S. Army. Our kids were raised to be resilient to changes which is an important skill to possess when you move 16 times over 13 years. However no life or traumatic event can ever prepare parents to hear “your daughter has a tumor in the left atrium of her heart.

“Rhonda” a 6.9-2.9-2.4 cm with two smaller tumors attached in the left atrium of Savannah’s heart

That is However what we was told after Savannah’s having complained a few times of “my heart feels funny”. It ultimately took a trip to our local emergency room, the cardiologist and hooking her to a halter monitor, who after wearing for less than 48 hours had us return to the local emergency room and it was then that they found the tumor on an echocardiograph. It’s fair to say that seeing a healthy happy 13 year old girl, then seeing this in her chest scared all medical professionals and completely shocked all cardiologist. Once the echo was performed they immediately transported us to Children’s Healthcare.

Look at that beautiful carefree smile💜

CHOA was both shocked and completely intrigued by Savannah with every cardio doctor,student,P.A.,and nurse all coming to see Savannah and listen to her chest. Right away the doctors were confused by her tumor images and although her Cardiologist was pretty sure it was a benign mxyoma the Oncology department wasn’t so sure. This is why during the first five days at CHOA Savannah underwent a lot of testing. Including a full body MRI scan, checking for any other tumors. However when that test and the tumor board agreed that with the lack of more tumors this was most likely a benign mxyoma and the head cardiology surgeon decided it had to be removed due to its size, and the pressure it was placing on her mitral value. On July 19th early in the morning my beautiful baby girl was wheeled into open heart surgery.

Hardest thing ever is to walk your child into major surgery and just pray for the best

Savannah’s surgery lasted about five hours in total but at the time felt like a lifetime. I originally thought for sure that she had cancer, and I later learned that dad and Savannah also believed that was the case. However when her surgeon sat us down in the family room after he had removed the tumor, he made what I imagine was one of his greatest regrets in his career when he promised me “It was a benign mxyoma and it would never come back, and after Savannah healed from the surgery she would be fine, and have a normal life”. It was in this moment that I believed we had made it through our toughest battle and I was so grateful.

Savannah immediately after her surgery (awake incubated)

Savannah showing her incredible resilience 2 days after open heart surgery 💙

Savannah didn’t really surprise anyone in how quickly she bounced back! We was prepared for her to stay in the ICU for 2-4 days, however she was only in there for 24 hours, and actually was discharged from the hospital on July 23, 2019. Just shy of 3 weeks before the start of her eight-grade school year. Savannah was excited as she had guilt tripped me into letting her add blonde highlights to her hair “since I had open-heart surgery I think I deserve highlights before school starts”. I definitely agreed, and we left the hospital shocked at what we went through, but with a new perspective of the importance of learning to enjoy and cherish our lives a little more as you never know what the future holds!