TRUST #39: A Good Report on EL's 6th MRI

On Wednesday, we took a trip to St. Louis for EL's 6th sedated MRI, and then a checkup with her Neuro-Oncologist. These brain scans have been necessary for monitoring the potential growth of a [currently] non-active tumor in her pituitary gland, and also a cyst in her pineal gland. Her last MRI was 2 years ago.

These visits are never easy, but this one was probably the easiest one we have had so far. EL was in a fairly good mood and knew what to expect, which was helpful; but there was one thing they did differently that made a world of difference. Instead of using Versed to relax her during the IV needle stick, they used a mask with Nitrous Oxide (the stuff used in a Dentist office). 

Versed was previously administered as a spray in her nose, which she hated; and it gave side effects that always made her wake up grumpy and angry. The Nitrous, however, was easy to use, smelled good (like cherries), helped her to relax during the needle stick, and she did not wake up with a nasty Versed "hangover." Woo Hoo!

After she woke up, we gave her some apple juice to drink and waited until she could walk without falling over before leaving to get lunch. Then, after lunch, we met with her Neuro-Oncologist to go over the results.

In the picture below, the left side gives us a look at the scan from Wednesday. The right side is a scan from 2 years ago. On the left, I circled and labeled the two spots of concern. The pituitary tumor is a small solid mass at the lower portion of the pituitary gland. The pineal cyst is harder to see because it is fluid-filled; but it can be seen inside of the pineal gland.

I am pleased to report her MRI results showed no changes from the previous scan! The tumor and the cyst have not grown in size, and are not causing any problems with vision or with hormone levels. This is great news, of course; and we won't need to have another scan until 2 years from now, unless she begins exhibiting symptoms. Another Woo Hoo!

We are thankful, grateful, and blessed, and will continue TRUSTING in the Lord - not just because of our good results, but because He is our God, He cares about us, and He is worthy of our praise.

TRUST #27: EL is 2 years Seizure-Free

Look closely at this photo and you can see people on top of the big rock. These people went on a journey to climb that rock in order to focus on the beauty around them. It reminds me of the climbs we have taken in life with our daughter, EL. Not physical climbs as we see in the photo; but emotional, developmental, and spiritual climbs - all due to EL's various health issues. Each climb we have taken has been used to help us exercise our faith, and to help us focus on the beauty around us.

It has been awhile since I have given an update on EL. Thankfully, that means she hasn't been having any major health issues lately. Yay! In fact, her last seizure was on July 15, 2016, two years ago today. After that seizure, her Pediatric Neurologist added an additional medication, which seems to have been the one that was needed to stop the seizures.

She started seeing a different Neurologist in February of this year - one that see's adults. We like her, and are happy her office is only an hour's drive from us instead of two. Next month, we will go back for a 6-month checkup and discuss weaning EL from the first medication she started taking and will see how things go.

Watching your child suffer through health issues is heartbreaking, to say the least. Through it all - her autism, her anxiety, her epilepsy, and her pituitary tumor - God has been a refuge for us. He has given us the wisdom, patience, and the strength we have needed for each and every climb we've come to. That is what TRUSTING in God can do.

EL's 5th MRI & A Visual Test

It has been over a year since I last gave a health update on EL. I have shared a few updates on my Facebook page but, for those of you who are not on FB, or for those of you who might have missed the updates, here is the latest info...

1.  After EL's medication was increased in November 2015, her seizures continued to return every couple of months. So, in July 2016, her Neurologist said it was best to add an additional medication. We were concerned, at first, with the possible side effects of this new med, but she did amazingly well and has, thankfully, been seizure free since then. It is great to know we finally seem to have the seizures under control!

2.  Her 5th MRI was in October 2016. There were no changes to the pituitary tumor, so that is another praise. She is now seeing a new Neuro-oncologist, and we like her. She seems very thorough and wants to make sure EL is getting the proper care needed. The previous doctor was good, but gave us the impression that we no longer needed to bring EL for any more follow-up MRI's (after this 5th one) because they keep coming back as unchanged. However, this new doctor explained that a pituitary tumor can grow at any time, so we need to continue keeping watch and do an MRI at least every 2 years from here on out, or sooner if she begins having symptoms.

3.  The new Neuro-oncologist also scheduled EL to have a special eye exam that tested her vision, specifically her peripheral vision, called a Visual Evoked Potential. A pituitary tumor can affect the optic nerve, so the doctor wanted to have a baseline of how well EL is currently seeing. The test was done on  December 14th in St. Louis. It was done in the EEG department, where they attached electrodes to her head and had her sit and stare at a red dot on a computer screen while black and white squares flashed around it. She did not like the test, but did fairly well considering her dislike. Due to the holidays, it took awhile to get the results back. But we finally got a call yesterday, and the test showed everything to be within normal limits.

So, with all this new information, the plan is to continue seeing the Neurologist every 6 months regarding EL's seizures. But, we will NOT need to have any more testing regarding the pituitary tumor (MRI's, Visual Tests, or bloodwork) until October 2018 (unless symptoms appear)! We are so thankful for this news, and are also grateful for all the prayers that have been sent through the years for our special girl!

Update on EL's Seizures

Last week, I told you that EL's SEIZURES KEEP RETURNING. So, we took a trip to St. Louis on Wednesday to have a sleep-deprived EEG. Her last one was 2 years ago, so they wanted to check for any changes and see if an additional medication would help to control her seizures.

I had to stay up with her until Midnight on Tuesday night before the test. Then, I had to wake her up again at 5:00 on Wednesday morning, and keep her awake during the car ride to St. Louis. After getting her prepped (which she hated), her testing finally began around 3:00 p.m. and she was able to fall asleep quickly (which worked out great to get the information needed.)

Today, the doctor's office called with the EEG results. It was considered abnormal, but it didn't have any significant changes compared to her previous EEG. That is good news. With this information, they are not going to add an additional medication. Instead, they have once again increased the dosage of her current meds, and we will see how things go. (Apparently, her bloodwork showed her medication level was still lower than it should be, so hopefully this will be the last increase needed... at least for awhile.)

We are grateful for the prayers you have said for our sweet girl. Our God is good to listen to our prayers, and to provide the strength we need in difficult times.

EL's Seizures Keep Returning

October 2015 - Before her 5th MRI

It has been awhile since I gave an update on our daughter, EL. Generally, she has been doing well since my last update in February. In fact, her latest MRI checkup was earlier this month and it showed no changes to the size of her pituitary tumor. That was great news to hear, and she won't need to have another MRI until a year from now. However, in March, her seizures began to increase and, since then, we have had to boost her medication at 3 different times.

Most of the time, she has had mild seizures that consist of her staring and "blanking out" for a short time, not responding to us, and then in a state of confusion for several minutes after. But, occasionally, she will have a full-blown grand mal seizure complete with a red face, drooling, and strong convulsions.  She has always done well for a month or two after each med increase, but the  seizures eventually return.

Last night, EL had a hard seizure around 8:00 p.m. while watching TV. Then, she had another one this morning around 10:00 a.m. while we were doing some school work. The seizures were only 14 hours apart. After consulting with her Neurologist today, she wants to have labs drawn this week to check the levels of her medication. Then, we are also scheduled for a sleep-deprived EEG next week. Depending on what they find out, she may do well with an additional medication to help control the seizures. I hope so.

It is so hard to watch my child having a seizure. I have become more used to them in the past two years, but it still bothers me to see them; and, I feel like I don't want to leave her side because we never know when another one will suddenly happen. Her meds will not be increased again until after her EEG next week. So, as you think of her, keep her in your prayers this week - that she will not get hurt in the midst of any more seizures, for my anxiety level during the waiting process, and that the tests will show what needs to be shown.

Philippians 4:6 - Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. (NASB)

Update on EL's Bladder Issues

It has been a LONG wait to get EL in to see a Pediatric Urologist, but we finally saw one this week for her BLADDER ISSUES.  I previously mentioned I would give an update after we had seen the Urologist but, for privacy sake, I won't go into all the details here. I will tell you that we ended up spending a good amount of time in the Urology department and, after having several painless tests done, we finally have a plan of action to help with EL's frequent need to use the bathroom.

Thankfully, all the tests showed normal kidneys and bladder, and there is nothing seriously wrong. It will just take some time to get things back to where they should be. We will follow up with the Urology department in one month to let them know how things are going and, hopefully, that will be the end of it.

GOOD NEWS: EL's Lab Tests Were Normal

Last week, I posted about EL's BLADDER PROBLEM.  Since then, we received the order from her Endocrinologist to have a urinalysis done, collected it, took it to a local lab, and the doc called the next day with results. Everything was normal! Her Calcium was fine, she is not diabetic, and everything else pointed towards a normal Vasopressin level. This is great news because it means the pituitary tumor is NOT causing any problems. We're so thankful for that and, most likely, she won't need another brain MRI for at least a year from now. The Lord is good.

Unfortunately, EL is still having frequent bathroom breaks, and we don't know why. So, her Pediatrician will be referring us to a Urologist soon. I think we will be able to stick closer to home for this appointment, so that will make things easier.

Thanks for your prayers. I'll update again after we have seen the Urologist.

EL's 4th MRI and A Bladder Problem

EL getting ready for her 4th MRI

Our last update on EL was in August, and we had good reports from her doctors at that time. Since then, thankfully nothing has changed except for one thing - there has been a major increase in her going to the bathroom. We have seen her regular Pediatrician twice for this issue, and it has been determined she does not have a bladder infection, and is not in any pain (that we know of). She has also been given a mild laxative to help keep the urinary tract from being blocked. The Pediatrician said, if things do not improve, she would refer us to a Urologist. That may still need to happen but, last week, we took another trip to St. Louis and found out some interesting news related to this problem. It COULD be related to her pituitary tumor.

At last week's visit, we took EL for a follow-up MRI (EL's 4th one so far), followed by  two doctor appointments -  one with the Endocrinologist, and one with the Neuro-Oncologist. Things went well with the MRI. EL has matured a lot over this past year since her last MRI and, although she did not like being there, she cooperated very well. I'm thankful for the prayers of family and friends that I know helped her get through this difficult time. The worst part of it all was when they did the needle stick in her arm to put in the IV. But, she did not need Versed to calm her down beforehand. In the past, Versed has tended to make her REALLY grumpy while she was coming out of sedation, so I'm glad we didn't have to deal with that this time. 

After the MRI, we saw the Endocrinologist. He asked us if anything has changed since we last saw him. We told him the only thing that has changed is how EL seems to be constantly in the bathroom. The Endocrinologist informed us the pituitary gland could be a causative factor in increased urination. We did not know that! Apparently, the pituitary gland makes a hormone known as Vasopressin, which regulates the body's retention of water.  A deficiency in Vasopressin (which can happen with a pituitary tumor) causes frequent urination and thirst. These are symptoms EL has been having. So, the doctor ran a urinalysis while we were there. It was not concentrated enough to get the answers we need, so we are waiting for an order to come in the mail to have a morning collection done. Once we get that done, and get those results, we will know more. If there is no problem with the Vasopressin, then a Urologist may still be in order. I did, however, just recently find out there are two close family members who were diagnosed with a spastic (or overactive) bladder! Hmmmmm. Makes me wonder if that is what is going on with EL. Its hard to know, since she isn't able to communicate as effectively as needed.

The last appointment was with the Neuro-Oncologist. I'm happy to report there were NO CHANGES to the MRI! This is such great news. It means the pituitary tumor has not grown, praise the Lord, and the doctor does not recommend any treatment at this time. We are not sure yet when the next MRI will be. It could be a year from now, or it could be in 6 months. That will be determined once we get the next urinalysis results. I'll let you know how things turn out. 

Good Reports for EL, and a Sleep Apnea Update

In the past 3 weeks, we have had 4 different appointments for EL. Three of them were follow-up appointments, and one was a new consult...

(1) She had a checkup with the Sleep Clinic, and we discussed the results of her recent Sleep Study. Apparently, when the doctor previously called us with the results, she did not explain everything to us over the phone. We found out more details, and the results showed EL's obstructive sleep apnea is a bit more severe than we had originally thought. So, we were referred to an ENT (Eye, Nose, Throat doctor) to evaluate her tonsils and adenoids.

(2) At the ENT appointment, the doctor said EL's tonsils are small, and are not the cause of her sleep apnea. He also took an X-ray of her airway/nasal passages, and those are fine. He also cleaned wax out of her ears and did a hearing test. Her hearing is also fine. So, all went well with the ENT, and we shouldn't need to be seeing him again. We are glad for the good report, and happy she does not need surgery to remove her tonsils. However, there is still the issue of how to treat her sleep apnea. We will probably be trying SINGULAIR, a prescription allergy medicine to reduce inflammation in the nasal passages. It is supposed to help with mild sleep apnea. If it doesn't help, then we will need to consider a CPAP machine. 

(3) After the Sleep Clinic, she saw the Ophthalmologist for an eye check. Thankfully, they did not need to dilate her eyes this time to get a good look inside. Her vision is good and she does not need glasses; but, most important, the optic nerve is in good shape, which means her pituitary tumor has not caused any irritation to the nearby optic nerve. That is great news!

(4) The Endocrinologist also saw her. We mostly just discussed whether or not we have seen any changes since we last saw him. Then, we were sent to the lab for a blood draw. It is always stressful to hear EL scream through a needle stick. She doesn't understand why she is being hurt, why they need to take her blood. This time around, it was especially difficult because her blood was coming out very slowly so it took a lot longer before they could remove the needle. Even if it doesn't hurt, she still screams at the sight of them sticking a needle in her arm. Her anger burned at us, and it was very stressful, but we made it through it. We were thankful to find out the lab results are all normal. Again, this shows the pituitary tumor is not causing any problems. Great news again, thank the Lord!

As far as it looks right now, we should not need to return for any more check-ups until the end of November, although I am waiting for a call from the Neuro-Oncologist to see when we should see him again, and also when to schedule the next MRI. The LAST ONE one was done in November 2013. I do not look forward to another one, but I know we will get through it, just like we always do.

EL Has Mild Sleep Apnea

I was reading through some old posts, and realized I never updated you on the post I wrote back in March about A POSSIBLE SLEEP DISORDER FOR EL.

The Sleep Lab appointment was on April 18th. David and JJ stayed with my parents that night, while I stayed at the hospital with EL. It was a long, rough night but we made it through. Here's my biggest question: Why do they call it a "Sleep Study" if you barely get any sleep! Ha!

In this picture, EL is getting hooked up for the night. Besides the sleep study wires, they also did a full EEG on her to check for any seizure activity.

Here she is trying to settle into her bed. I had the pull-out chair next to her. We sat and watched a movie for awhile until it was time to turn out the lights. You may be able to tell by her expression that she was not happy about being there.

The hard part for EL was that she was not allowed to sleep on her stomach like she always does; that really upset her. But, what she hated worse was the breathing monitor they placed under her nose. It was very uncomfortable for her because they had to tape it on to hold it in place. She was such a trooper, though.

 

Despite being awakened several times throughout the night (bathroom breaks, nurses checking on wires, etc.) EL did manage to get some sleep. Not much, but at least enough for them to get some results.

 

It took a month to finally get a call from the doctor with all the results. Thankfully, the EEG did not show any epileptical discharges this time. So, apparently, the medication is working to control her seizures. They did, however, diagnose her with mild Sleep Apnea. It runs in the family, so it didn't really come as a surprise. 

 

They gave us our treatment options over the phone:  (1) Wait and watch, (2) See an ENT for a consult on her tonsils and adenoids, (3) Use a C-PAP machine, and (4) Give medication to help reduce inflammation in the nasal passages.

 

We will be seeing the doctor again in July to discuss our treatment options more but, for now, we are choosing to wait and watch. Her oxygen level never went below 96%, so that shows us it is a very mild case, thank the Lord. 

 

Sorry it took me so long to give an update. (But, at least it wasn't "bad" news, right?!)  

 

 

A Possible Sleep Disorder for EL

EIGHT MONTHS AGO, our daughter was diagnosed with seizures and began taking medication to control them. As far as we know, she has not had any more visible seizures (unless she has had some at night that we haven't seen). However, for the past 6 months (or there-about), we have noticed some differences in EL's behaviors:  signs of depression, easily irritated, outbursts of anger, difficulty comprehending, and a decrease in cognitive function. After Christmas, I called her Neurologist to discuss whether or not the seizure meds were the cause of these changes. She said it is very possible. However, she also wanted to rule out a sleep disorder, since we had previously discussed EL's seeming lack of sleep. We were referred to the sleep clinic and an appointment was set for March 12th (which was this past Wednesday).

Our consultation with the Nurse Practitioner at the sleep clinic went well. They asked us a lot of questions and determined EL should be evaluated for a sleep disorder. The NP suspects either Restless Legs Syndrome or Sleep Apnea. Based on the behavior changes, and family history, I am thinking more along the lines of Sleep Apnea, but we will see. We are waiting to be scheduled for an overnight stay at the clinic, most likely sometime in April. I will be staying with her in the room. They will hook her up to all sorts of machines and watch her breathing, movement, sleep cycles, etc. They will also do an overnight EEG to determine if she is having seizures in her sleep. This is something we have been wanting done for several years, so its good we are finally getting it done. In the meantime, we are increasing EL's iron intake, and will also be giving Melatonin - two things recommended by the NP.

I am thankful for good doctors and for the medical technology that provides us with needed answers; but, if I were to say I'm not tired of seeing all these specialists, I would be lying. I know EL is tired  as well. Over the past 9 months, she has seen her Pediatrician, a Neurologist, an Endocrinologist, a Neuro-surgeon, an Ophthalmologist, a Neuro-Oncologist, and now the sleep clinic. She has also had bloodwork drawn several times, has had a sleep deprived EEG, and had 3 MRI's. It has not been easy on any of us. BUT...  the difficulties we face in this life are only helping to draw us closer to our Lord.

James 4:8 - Draw near to God and

He will draw near to you.

 

EL's 3rd MRI

Its been over a month since I LAST POSTED about EL and her enlarged pituitary gland. At that time, the doctors said they did not really know what was causing her pituitary to be enlarged, but suspected it to be a benign tumor of some sort.

On November 6, we took EL back to have another MRI to check for any new enlargement. Then, we saw the doctor. After looking over the pictures, and comparing them to the ones taken 3 months ago, the doctor said there is indeed a tumor, however, it has not grown and can be considered a non-active tumor. He is not concerned about it at this time and said she will not need to have another MRI until one year from now (unless, of course, she starts having symptoms). We are supposed to continue following up with her Endocrinologist and an Ophthalmologist, to keep watching and make sure it is not causing any problems. But, those visits will not be until about 6 months from now. So... we thank the Lord for the good report! And, we feel like we finally have some of this behind us now. This is such a huge sigh of relief! Especially since this last MRI was really difficult on EL, as well as on her daddy and me. Let me give you a little sample of how it went...

When EL came out of sedation, she was super irritated and grumpy. She immediately wanted to get up and go to the bathroom, but was still so groggy that she could barely sit up. We put her into a wheelchair to get her to the bathroom, and she grumbled about not being able to walk. The nurse and I ignored her complaints and got her situated in the bathroom. Then, she could not go, even though she had so adamantly said she needed to. So, we took her back to her room, where she promptly said she needed to go again. I asked her if she was sure, and according to her, she was. So, I took her back and we tried again. Still nothing. So, back to the room we went. She sat in the bed and grumbled, mumbled and cried. I held her and told her it was okay to cry, but she just got mad and said, "Its NOT okay!" but, then she cried some more. (sigh)

EL needed to drink something before we were allowed to leave, so the nurse brought some apple juice and an orange drink. She didn't want any. I told her she needed to drink one and gave her a choice. She chose the apple juice (because, according to her, she "hated" orange drink, which she really doesn't.). So, she drank the apple juice and shivered under the covers while watching cartoons(due to the anesthetic they used on her) . Shortly after finishing the apple juice, she said she wanted the orange juice also. She drank it, and didn't hate it after all. Then, she said she needed to go to the bathroom again. Okay, let's try again.... but she didn't want me in the room with her. I stepped out and this time it was a success! But, she continued her grumpy mood and made sure to let me and everyone else around her know that she "hated" it there and doesn't ever want to go back! "I know, Sweetie.... I know...." (and, by the way, she also let me know her name is NOT Sweetie!)

Her mood quickly changed when we arrived in the doctor's office and she saw a toy she remembered from the last time we were there. Oh, she loves this toy (because its a dog), and I'd like to try and find it for her somewhere, but can't seem to find it online. I don't even know the name of it. I know it is made by the Evenflo Company, and I think its some sort of travel toy, and it plays music when you push certain buttons. Here is a picture of it. If anyone knows where we can find one, please let us know.

Here is EL in a much happier mood, sitting in the doctor's office and drawing the toy...

Its hard to know what goes on in her mind sometimes. But, when we find something that makes her happy, that makes us happy too. We love our sweet girl, and we thank you for the prayers you've said on her behalf. God is good, as always.

Another Trip to St. Louis Brought Good News

Yesterday, we took another trip to St. Louis for EL. This time, we had a consultation with a Neuro-Oncologist. When I first heard that title, it scared me a bit, because I automatically think of an Oncologist as someone who treats cancer. However, when the nurse practitioner set up the appointment with us, she told us this type of doctor treats ALL kinds of lesions in the brain, whether they are cancerous or not. So, because of EL's enlarged pituitary gland, we were referred to him, and he will most likely be our main contact from here on out regarding any future treatments.

The doctor and his assistant shared with us that all of EL's blood work from two weeks ago came back good. So, praise the Lord for this great news!

They also showed us the pictures of the enlarged pituitary gland and said it is not acting like a fast-growing tumor. Again, that is great news!

We still do not know exactly what the lesion is. So, for now, we will just wait and watch.

In about a month, we will return for another MRI to check and see if there is any enlargement. The last one we had done was in August, so that will make them 3 months apart. Until then, we carry on as usual.

It was such a beautiful day so, after the appointment, we took a quick visit to the St. Louis Arch. The Visitor's Center was closed, but we enjoyed getting a close-up look at this "gateway to the West."

A Possible Tumor for EL

The last update on EL's Health issues was posted ONE MONTH AGO, when I shared the results of her 2nd MRI. Finally, on Tuesday and Wednesday of this week, we were able to consult with three different specialists regarding the spots in her pituitary and pineal glands.


This is a side view of the brain, with the front of the brain being on the left. Click on this picture to enlarge it, and you will be able to read where the pineal and pituitary glands are located.

THE NEUROSURGEON:  This was the first appointment on Tuesday. After examination and discussion, the doctor does not believe the two spots are related. The one in the pineal looks to be a a simple fluid-filled cyst. The one in the pituitary is a bit more complex. He said there is a good possibility that EL will need a biopsy done at some point in the future. However, we need to wait for blood work results to determine just how urgent it is. A level of TUMOR MARKERS was drawn. So, we await the results of that, which can take at least a week to get back. (Elevated tumor markers can be an indication of a tumor that is cancerous, or for certain types of benign tumors.)

THE OPHTHALMOLOGIST: At this appointment (also on Tuesday), EL was put through a thorough eye exam, including having drops put into her eyes to dilate the pupils. The exam was done to see if the enlarged pituitary was affecting her vision at all, or if the enlarged pituitary was causing any sort of damage to the optic nerve. (The pituitary is abutting up against the undersurface of the optic nerve.) It wasn't a fun experience for EL, but was necessary. Thankfully, the exam revealed that she has 20/20 vision and her optic nerve is in good shape!

THE ENDOCRINOLOGIST:  This was the final appointment, and probably the most important one. At this visit, the doctor examined EL, and talked with us about her symptoms. Currently, the doctor cannot give us a definite answer as to what is causing EL's pituitary enlargement. He ordered blood to be drawn to check her hormone levels and, once these results come back (along with the Tumor Marker levels), we will know more.

CONCLUSION:  The word "tumor" is a scary word. However, the doctors explained that a tumor just means there is an abnormal growth. It can be benign, or it can be malignant. The current indication is that, IF this is a tumor, it is most likely benign. So, if all of the blood levels turn out to be normal, then we won't need to be seen again for 3 months. At that time, they will do another MRI to see if the spots have enlarged or stayed the same. If, however, the blood levels are abnormal, then we will discuss what the next plan of action will be.

As a parent with a medical issue, I have fought hard to get well for the sake of my family; but, even though going through treatments was a hard thing for me, it has been 10 times harder to watch my child going through numerous medical tests. Its one thing to suffer as an adult, but its entirely different to watch your child suffer, especially when she doesn't truly understand why she is being put through these tests.

Through it all,  we will hold tightly to the promise that the Lord is there to help us through this.

Psalm 121:2 - My help comes from the LORD,

Who made heaven and earth.

EL's 2nd MRI

Three weeks ago, I mentioned my daughter's MRI results, and said she would be going back for a 2nd MRI to get a closer look at two spots. (Note: In order to give her a "name" and make things easier as I write, she will be known as EL instead of just "my daughter"). The 2nd MRI was on August 9th. Things went well, overall, although EL woke up a lot grumpier this time than she did after the first one.

One week later (which was this past Friday), we finally received a call from the doctor regarding the results. This is what we currently know:

1.  The spot in the Pineal gland looks to be a fluid-filled cyst. It may or may not be causing any problems. Many people have cysts like this for years and don't ever know about it unless they have an MRI done for some unrelated reason.

2.  The Pituitary gland is enlarged, but they still do not know the cause of the enlargement.

3.  The good news is that both of these spots have not increased in size since the first MRI was done, so they are not growing (at least not very fast).

4.  The next step is to have her seen by two different specialists. One will be a Neurosurgeon, for an evaluation and opinion of the spots. The other is with an Endocrinologist who will check her hormone levels. If her hormone levels are high, that could be the cause for the Pituitary enlargement. If they are normal, then something else is the cause.

The appointments for these specialists have not been made yet, but we are going to try and get them made for the same day to save on time and travel. 

One thing "nice" about traveling to St. Louis for EL's appointments (we've had 3 so far), is that we have been able to spend some extra time with my parents. It has worked out for them to watch our son, JJ, with each trip we've made. I am grateful to them for their help and support.

As always, God is good.

Updates on My Blood Clot and My Daughter's MRI

I recently read our newest church newsletter and, as always, browsed over the list of many people needing prayer. I saw my name listed, and also my daughter's name listed, and it was a bitter-sweet moment for me.

It was "bitter" because I was reminded of what we are being prayed for - my recovery from chemo, the blood clot I developed post surgery, and the cause of my daughter's seizures. I am ready for these situations to be completely resolved, but that hasn't happened yet.

Then, it was "sweet" because I was reminded of how blessed we are to have so many people praying for us.

Here is an update on the BLOOD CLOT, I posted about a couple of weeks ago: 

Last Wednesday, I saw the doctor again, and the swelling in my arm is going down. This is a good sign that the clot is dissolving. He is having me continue with the Arixtra shots (blood thinner), and I will see him again on August 7th for another checkup.

He also decided to start me on the Tamoxifen. Even though there is a slight risk of blood clots with this medication, he said I should be fine since I am on the blood thinner. So, my Tamoxifen journey has begun; and, so far, all is well with that. If things continue to go well, I will be taking it for the next 10 years to reduce the chances of any cancer recurrence.

Here's an update on my daughter's situation:

Her MRI results showed two masses - one in her pituitary gland, and one in her pineal gland. She has another MRI scheduled for August 9th to look at these masses more closely. It is very common for cysts to be found in these glands, so we are trying not to think the worst. But, quite honestly, these findings do concern us.

I will try to keep you updated as things unfold. Thankyou, again, for your prayer support. Please continue as you think about our family, because I KNOW they are helping get us through these uncertain times.

No matter what, God is good ALL the time.

Preparing A Child for an MRI

In a PREVIOUS POST, I mentioned my daughter had a sleep-deprived EEG done, due to some new onset seizures. The EEG showed epileptiform discharges, which basically means she has some form of epilepsy. She was put on medication (Keppra) to keep the seizures under control, and was also scheduled for an MRI.

My blogging friend, Sylvia, also has a teen daughter with epilepsy and autism. She has been dealing with yearly MRI's for the majority of her daughter's life, so I asked her what to expect and if she had any advice for us. You can check out her response on her blog: 

LIVING AND LEARNING WITH OUR NEW NORMAL

While my daughter's situation is a bit different than Sylvia's daughter, I did glean some helpful advice from someone who has gone before us. (Thankyou, Sylvia!)

This past Tuesday was the day of the MRI. She did really well with it all, and we are now waiting for the results.  Here are some of the things we did to give us a more pleasant experience, some of which were already mentioned on Sylvia's blog: 

• My husband and I went together and shared in the care of our daughter, as well as kept each other company.
• We made sure we arrived in plenty of time, so we didn't feel rushed and more stressed out.
• We asked my parents to watch our son, so we could keep our focus specifically on the needs of our daughter during this time.
• We prepared our daughter ahead of time with explanations of what she could expect.   
• We prayed and had our family and friends praying.
• I bought lots of Jell-O and clear fruit juices ahead of time to keep her tummy somewhat satisfied, since she wasn't allowed to eat anything for 8 hours prior to the test. (This was because she needed to be sedated in order to keep her completely still during the test.)
• We distracted her prior to the test with a favorite movie.
• We allowed her to bring a favorite toy for comfort. (The toy of choice this day was a stuffed Rudolph the Red Nosed Reindeer.)
• Before they inserted an IV into her hand, we allowed them to give her nasal Versed, a medication that was sprayed into her nose in order to relieve anxiety. She did not like the spray up her nose, and had a few tears, but it was very brief. They also used a numbing spray on her hand, Pain Ease, before inserting the needle.
• We were there with her before they took her to the MRI room, and were there with her when she woke up.
• We stayed calm and reassuring, which always helps to keep her calm as well.
• As soon as we were done with the testing, we left the hospital and headed back to a more comfortable environment.

Maybe this will be a help to someone else who is preparing for their young child's or special needs child's first time MRI. Feel free to contact me with any questions.

CANCER JOURNEY #23: Many Blessings This Week

This week has had its challenges, but it has also had its share of many wonderful blessings...

 

First of all, at this week's chemo treatment, my arm port was still a bit swollen and sore. However, I had a good nurse who seemed more experienced with arm ports, and she was able to access the port! My husband and I were very pleased. The port worked well and there were no problems. So, it looks like I get to keep the port until treatments are finished which, if everything goes as planned, will be in two more weeks!!! I'm glad this new port was not inserted for no reason. Thanks for the prayers!

 

The day after treatments are my best and most energetic days. I'm not sure why, but that's how it has worked out so far, and I am so glad for at least one really good day per week. It was especially helpful this week because, on Wednesday night, we had to prepare our daughter for a sleep-deprived EEG on Thursday morning. We believe she has had at least two seizures in the past few months, so her Pediatrician referred us to a Neurologist in St. Louis.

 

We  went through this same sort of thing with her about 5 years ago, and she did not fall asleep during the EEG testing, so we were pretty sure it would not happen this time either. However, as she relaxed and listened to the soft music with the lights down low, she did end up dozing off. We are thankful for that, and hope the testing revealed what the doctors need to know. (The results will not be back until early next week; but, if the EEG is clean, then we will only need to do a wait and see approach).  

 

By Thursday afternoon and evening, my energy level began dropping again. Today, I had trouble getting out of bed and have spent most of the day on the couch. I am stiff, swollen, and weak; and the chemo-induced neuropathy has continued to increase in my hands, feet, and now my face. I am drinking a lot of fluids today (a hard thing for me to do) to try and flush the toxic chemicals from my system quicker. In the meantime, my kitty is laying next to me on the couch, keeping me company. What a blessing and comfort she has been.

 

I am continually grateful for the love of family and friends who are helping our family through this. I have such a hard time asking for help, but many have provided snacks, meals, prayers, childcare, written encouragement, and meaningful gifts. Thankyou from the bottom of my heart! You have blessed my life, and I pray the Lord will bless you greatly in return.  

 

1Th 5:11 So then, go on comforting and building up one another, as you have been doing. (BBE)

 

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