This has been a very very rough month for us. Ella is having more bowel and bladder issues and they seem to have escalated. She has been chronically constipated over the last few years but not as bad as she has been this past month. We have been trying to get it under control with the use of laxatives and enemas, but we just can’t seem to get ahead of this. Doctors are saying that we need to just figure out what works for her…but it seems like nothing is working. The conclusion right now is that her colon is just not having the contractions it is supposed to be having….most likely due to nerve damage from either the tumor itself, or damage done during the tumor removal on her spine. IT is so frustrating for all of us….She is in pain daily, very bloated and gassy and very uncomfortable, and then of course the laxatives make her crampy and the enemas just traumatize her so much that she won’t let us change her diaper for weeks after.
She had her 4 month MRI last week. She did so well this time at the scan. She is starting to understand the process better…understands she cannot eat or drink anything before, and this time she took the gas mask like a pro. I couldn’t believe it. We usually have to hold her down, but this time, she totally let the doc put it on her and she took deep breaths till she fell asleep. It was so nice to see her not struggle.
MRI showed that the existing tumor has not changed in size. It did show some enhancements (lighting up) in some areas, but after careful review of the scans, the doctor said there was no need to worry. Her next scan is actually scheduled now for 6 mos away.
Her blood work showed some high glucose levels. Doc is not sure what this means. Hoping that is it not a sign of diabetes, as this is not something that runs in our families. She is to be tested again to see if we get the same results. I have to catch some urine from her to do this which is always a challenge!!
Someone said to me the other day that I need to start treating Ella like a normal kid. But in reality, she is not just a normal kid. She has extraordinary issues and always will. Right now we are at a wait and see approach with her bowel and bladder, but soon she will HAVE to start school….and these problems will really be a problem. I hope and pray for a miracle…
February 2015
So far, 2015 has not been a very good year. Ella continues to have bowel and bladder issues and everytime an issue arises, it seems to be worst than the last time.
Ella developed a pseudonomal bacterial urinary infection 2 weeks ago. It was causing her so much pain, she was screaming in pain literally every 3-5 minutes. I ended up taking her to the emergency room where they performed an xray and saw that she had a severe fecal impaction as well. She had an “excessive amount of feces in her intestines” and a very large impaction the size of a softball high up near her belly. On top of this she was suffering with a severe bladder infection. They performed an enema in the ER hoping to give her some sort of relief, however, the pain just got so bad that they ended up admitting her. The next few days were brutal. Pain every 5 minutes, screaming and begging for it to stop. Trying to push laxatives and enemas and ivs on a 4 year old is never easy. But the pain was unbearable. After 3 days, they decided to perform a procedure to manually remove the impaction. She was put to sleep for this, thanks God.
Doc said that her bladder was so full of urine that it was pinching off the intestines making it impossible for any of the stool to come out. So they were able to drain her bladder and then remove the blockage. Ella was so much better after she woke up and we were finally able to go home. Of course at home we had to deal with the yeast infection that came along from all the anitbiotics she took as well as the burn to her bum from the old poop. She never gets a break. When it rains, it pours.
This last hospital stay was very hard on her. She used to be pretty good with doctors, but now she is really scared. Everytime she sees a doctor now she is afraid they are going to hurt her. She actually shakes out of fear. The most difficult thing in life must be to see your own child suffer and to have no control over helping her.
During all of this, Ella also had her 6 month MRI. Scans showed no significant change in the existing tumor. It reamins practially the same size. This is good. No growth is good. But shrinking or disappearing would be better! One step at a time………..
Ella is now in preK. She enjoys going to school and has made some great friends. The teachers have been very accomodating to her physical needs and have been able to discreetly change her diaper on a regular basis. She has had a few kids ask her why she wears diapers and she simply says that she has a hard time going potty.
She is such a smart little girl. She amazes me every day. The love of my life, she is my world.
September 2015
This has been a rough week with Ella. Ella started to complain of extreme pain in her right foot. Pain that was so excruciating she was doubled over and screaming in pain. She said the pain was on the top of her right foot and nowhere else. It came and went in waves for several hours at a time and then would disappear quickly.
After a few episodes, I took her to the ER hoping to find out what was causing this. They looked at her foot and said they saw nothing….. was most likely either growing pains, muscle spasms or possible nerve pains from regenerating nerves. There was no treatment.
Went home and she continued with these horrible episodes through the night. Ended up going to see a neurosurgeon the next morning who believed she was experiencing nerve pain either from her existing tumor or from somewhere in her spine. He ordered an MRI stat to check to see if her tumor has started to grow causing a nerve impingement. MRI was done the following day.
Results were that the tumor remains stable and somewhat unchanged from the last scan in January. There is certainly nerve involovement at her L1-L3. However, these nerves innervate the right thigh and right hip. Not her foot. So, the tumor itself is not causing this pain in her foot, but conclusion is that it is nerve pain either regenerating or coming from inflammation in the lower spine.
Another possibility is neuropathy caused by her chemotherapy treatments. Apparantly this is a common side effect of some the drugs she was given at 7 months old.
If this pain continues, she will be placed on nerve pain medicine, Neurotin, to try to control the episodes. OF course, this medicine has a large list of side effects that we do not want to put in Ella’s little 4 year old body L
MRI also showed that she is severely constipated (which is unfortunately what it always says) so now we are dealing with increase of laxatives to get things moving again. On top of this, Ella is now having an allergic reaction to the O2 nasal cannula placed during her MRI and she is having bad allergy attacks L Lots of sneezing, itching and red eyes. And lots of Benedryl.
Ella Fights Back 
Prayers and Love Always.
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