I don’t know if you noticed that December was sort of a slow blog month for me. Not that I like crowding your inboxes daily, but I do try to post often. This past month has been very stressful. It all started the first week of December…I think. My little girl, who is amazing in every way, started to seem “different.” She was fussy all the time it felt like. My husband and I both noticed this change in her mood, but we figured it had to be the molars she was getting…even though she never really had acted that way before when teething.
About this same time that she was becoming more fussy, we also noticed she was getting constipated. I think she was actually constipated beginning sometime in November. Over the course of her life, she would get constipated occasionally, but after a day of increasing her fruits and water intake she would be back to normal. I didn’t think much of her constipation until NOTHING was working. Day after day, for a week, she did not improve. I made her a doctor appointment to see if we needed to give her something to help things along. During bath time a couple days before her doctor appointment, I noticed a puffy thing on her back, just above the natal cleft (aka butt crack).
This lump under the skin made her little butt crack look crooked. That had NEVER been there before. I had no idea what it was so I did what any other mother would do…I googled, “crooked butt crack in baby.” I’m serious. I google everything. The only things I found seemed harmless – from just birth defects (maybe inherited from a parent with a crooked butt) to harmless cysts. By the way, I was able to safely rule out inheritance, in case you were wondering. Nothing that I found actually seemed to describe my daughters strange lump, though. At our first doctor appointment, the doctor was not concerned at all about her constipation and said the lump looked like a cyst. He suggested I just give her prunes for the constipation (which I had been doing daily for two weeks!) and ordered an ultrasound of her”cyst” and an x-ray of her stomach. The x-ray showed moderate impaction of her bowels (basically that meant she had a TON of poop in there!) and the ultrasound was inconclusive; however; it appeared to be what they called a pilonidal cyst.
A pilonidal cyst is an irritated hair follicle and is usually seen in men with hairy behinds! Think ingrown hair that gets infected. Sorry. Ew. It can occur in women and in some more rare cases children/babies, but still, everything I was reading didin’t exactly match her cyst. After those tests, she was put on antibiotics to help shrink her cyst (even though antibiotics do not work in treating pilonidal cysts according to what I had researched, the doctor said we could give it a try) she was given them for 5 days, 3x a day. By the 4th day of being on antibiotics, I had watched the cyst change and get bigger and more red. Back to the doctor we went. He said her pilonidalcyst was likely infected and probably absessed and the only way to get rid of it for good was to do surgery. He thought that this cyst was painful and that she was avoiding pooping because of it. Meanwhile, she was still not pooping despite dietary changes. She was hardly eating. When she would poop at all (tiny rocks basically, sorry for the details) she would scream in pain, sweat, and say “no, no!” Her overall behavior continued to change. She was more miserable and began to ask to be rocked several times a day. Not like her at all. Prior to this, whenever I’d try to snuggle her and rock her she would quickly snuggle me for .5 seconds and then want “down please, mama!”
My toddler was seeming more and more like a newborn. I couldn’t get anything done at home. I just held her and rocked her all day. This CANNOT be normal. I kept trying to talk myself out of panicking, but the sick, throw-up feeling in my stomach just would not go away. As I rocked her for days and hours, looking into her sweet face and sad eyes I felt so helpless as a mother. All I knew to do was pray and keep bugging the doctors. At this point, I was crying almost everyday as I observed the changes happening in my little girl. Could this just be constipation? Is this really even a pilonidal cyst? Why is my daughter in pain all the time? She was on motrin around the clock, too. She was beginning to prefer being rocked or laying down almost 100% of the time. She was walking less and less. She was also not sitting in her high chair anymore. She would cry and say “down please mama, all done!” after only a few minutes of sitting. She was also not sitting in her carseat, in the bathtub or anywhere else! I noticed her on all fours or on her hands and shins all the time.
During her naps, I would lay on the floor beside her crib and cry and pray for wisdom and healing for my baby girl. I cannot tell you now grieved my spirit was during all of this. I think I just knew there was something more serious lurking inside her precious body. The doctors assured me it was all due to constipation which was probably being affected by the painful, infected pilonidal cyst. They said she was most likely not pooping because of the pain from the cyst. Our hospital in Bishop is small and is not set up to do more serious types of procedures on children (surgical procedures requiring general anesthesia). My doctor did offer to refer us for a surgery consultation to see if they could drain the cyst, but I felt like we needed to take her where they were more experience specializing in pediatrics. If in fact she did have an infected cyst, surgery was the only option to get rid of it and I wanted her to be somewhere where they were able to give her the best care possible.
Los Angeles is a 5 hour drive from where we live so we jumped in the car and went right to Children’s Hospital Los Angeles (CHLA) Emergency Department. In my eyes, this was a very real emergency. Something was wrong with my Gia Joy. So we arrived at Children’s Hospital Los Angeles Emergency department Monday, December 17th at 7:00pm-ish. When we saw the doctors I explained everything. I went over her history, the behavior changes (crying all the time, screaming when pooping too, not sitting on her bottom…like ever, changing size and shape of “cyst”, etc), the fact that we drove 5 hours because I felt this was an emergency and she needed help. BUT…They didn’t do one test. In fact, they treated me like I was a crazy person. They stuck their fingers up her butt multiple times as Gia screamed in sheer horror and pain and they just said “oh she is uncomfortable” and only constipated. Hmmmm, how could they shove their fingers so far up there if she was “so constipated?” They just glanced at the thing on her back and concluded it was just a pilonidal cyst, was not painful, and that she would never have to have surgery – ever, unless it became infected. They gave us some more Miralax (which I had already been giving her) except they increased the dosage, and sent us home. My husband and I asked them several times if they were sure that that was all that was wrong. They assured this crazy mother that it was. Confused and frustrated, we left to drive back home the next day. Baby Gia was still not any better. The increased dose of Miralax they gave us was still not working. As soon as we got back home she just kept getting worse.
Now she was rarely, if ever, walking or sitting on her bottom. She was more and more miserable – crying on and off ALL DAY and ALL NIGHT. Exhaused, deeply troubled, angry, and confused I called my pediatrician daily, usually crying and asking what else we could do since nothing was helping her and she was not better, not pooping, and now not walking. Everyday she was regressing. She might perk up for an hour or two (by perk up I mean smile and show some small interest in a toy we would show her), but then would be miserable again not long after so any “improvements”were very short lived. I had my pediatrician make us an appointment with the Pediatric Surgery team at CHLA, but the soonest appointment they had was Jan. 3rd. I didn’t think we could wait that long.
Sunday, December 30th, I had been crying all day and I just knew something was not right. I took Gia to the ER in our small town because I didn’t know what else to do or where else to go. By this time, she had been seen by 6 doctors who all had the same consensus: constipation with pilonidal cyst. All they did was give her this laxative or that laxative.
No one ordered a simple blood test, urine test, CT scan, or MRI. Ever. I have many medically savvy family members (doctors and nurses) who all said get CT scan and MRI asap! I should have demanded those tests be done, but I didn’t. I trusted the doctors too much. I called Gia’s pediatrician for the 100th time and told her we were at the ER in Bishop and that Gia was not better and we needed answers. She came right over and consulted with the ER doctor. They did a blood test, urine test, and 3 x-rays. She now had a fever and her x-rays showed she was STILL impacted – if not more imapacted than 2 weeks before. We were then air-lifted by Life Flight immediately (Gia and I in a tiny little airplane!) to CHLA and were admitted right away to the gastro-intestinal floor.
The most amazing pediatrician (Dr. Barber) came in to meet with me and get a case history. Finally someone was listening to me and taking my report and descriptions seriously. This doctor said she could not believe what all we had been through. She had the surgeons on-call come and look at Gia and they immediately ordered a CT scan. And that is when they saw the tumor, distended bladder, and bowel obstruction. The next day, Gia had an MRI so they could see more clearly where the tumor was.
We waited and waited to get the results. And then they told us. The results of the blood work and MRI revealed that Gia had a saccrococcygeal teratoma with yolk sac tumor. The imaging showed the cancer had spread to her lungs (tiny pieces) and to other locations on her spinal cord. The tumor was 9 cm and about the size of a large orange. It was obstructing her bladder (which was 5 times its normal size and fluid was backed up into her kidneys) and the tumor was also obstructing her colon, which is why she couldn’t poop. It was also wrapped around the nerves in the coccyx region of the tailbone affecting her ability to walk.
They told me this type of “yolk sac” or germ cell tumor occurs in the very early stages of development. As the cells are multiplying and differentiating in the first few weeks of embryonic development, a group of cells did not mature, but instead took on a life of their own and were now spreading. Happy new year to us. So there we sat. Our baby has cancer. They told us we had to start chemo immediately.
Let me just tell you, I did everything I could as a mom to protect her blood from the day she was born. No vaccines, organic everything (just about), no sugar, etc. She has only had a couple colds since birth, not one ear infection, and no antibiotics – except for what she was given to help the cyst. I struggled with the fact that I would now be poisoning my daughter with chemicals. There was no other option.
As I write this, my little Gia has undergone 5 days of chemotherapy. She is doing so amazingly well. The doctors here are experts in this type of tumor, and although it’s very rare, the treatment is very effective. They hope to kill all the malignant cells leaving behind the benign mass to be surgically removed. They are not sure how long this will take, but we will begin with 2-4 rounds of chemotherapy. I could write at least 10 more paragraphs about all that I am feeling and all that we are going through, but I don’t want to drag this post out even longer than it already is.
I wanted to let you all know that I will be focusing on my baby girl and getting her through treatment so there will most likely be a lot less posts. But I will be back soon. I know she is getting well! I have a very strong faith in God and I know He loves my little girl more than I do! He has a great plan and destiny for her life. We will continue to believe for her total and complete healing. Please pray for my little sweetheart!
My sister started a fundraising page for us where you can donate financially (as much or as little as you want) and I posted the link on the right side of the page. I will update you all on her progress over the next few months so check back. While I’m at Ronald McDonald house with Gia, I may have some time to post more speech therapy materials – I love my blog, my followers, and my caseload of sweeties back home! I hope life will be back to normal very soon.
Until then, I’ll do my best keep you posted and to keep sharing new materials along the way. Thank you all for keeping us in your prayers!