Prayers for my son, Christopher

[Lukaris]

Lord, have mercy!

 

[Dorothea]

He got the MRI done last night. He did really well. He had dinner about 20 mins before he went in and guzzled down the iced tea he had - finished the whole bottle in about three minutes lol and so that helps with getting the IV in. He felt nothing with the needle and enjoyed watching Pokemon movie the whole hour and a half.

Should get results today or Monday.

 

[Dorothea]

Thank you all for your prayers!

 

[Anhelyna]

I hope and pray that the results will be good.

Remember Dot - we are all with you in this - hang on

 

[prodromos]

Glory to God!

 

[isshinwhat]

Continued prayers

 

[ArmyMatt]

glory to God! continued prayers Dot!

 

[Dorothea]

Thanks, everyone. <3

 

[katherine2001]

Lord have mercy on Christopher and the whole family
I hope the results will be good ones. Keep us updated.

 

[~Anastasia~]

Keeping Christopher, you, and your family in my prayers!

 

[RileyG]

I will continue to ask for the Blessed Virgin's intercession, as well as St. Luke The Physician intercession as well. God be with your entire family, Dot.

-R.P.

 

[Dorothea]

Thanks, all!

 

[rusmeister]

 

[Dorothea]

Didn't really fill you all in on the doctor visit (in-clinic oncology clinic at Dana Farber) on Thursday. The nurse practitioner, peds oncologist, and neurologist visited him. The nurse was the first and asked many questions. This is what we learned and didn't think about it til he said it and we went over the history the past few months and longer. The change besides the headaches I learned when the nurse practitioner questioned him Thursday afternoon was his needing to sleep nearly sitting up (with pillows). He said it wasn't comfortable for him to lie flat. That could be pressure too because when he was a baby, anytime we laid him down for the night, he'd cry a couple hours later, all the way until he got the first brain surgery that reduced the tumor to much smaller. A day or so after we returned home, he fell asleep on his own on the floor amid his stuffed animals. That was the first time since he was born. He didn't sleep through the night then though because of his nose tube and throwing up in the middle of the night and us rushing in to suction his mouth and close to his throat out, which sometimes made him gag. That was a tough time. And he was set with his head elevated, but by the middle of the night, he was somewhere else in his crib, so this was a regular nightly occurrence until we got the g-tube put in. Thank God that helped. So, it just brought back memories of the early years of needing his head elevated because of pressure. Don't know why we didn't think about it at the time he'd began using the extra spongebob pillow under his regular one. That started at least 6-8 months ago. Ugh Just thought he wanted a bit more support since his regular pillow isn't very puffy. Well, hope to hear something tomorrow.

 

[Dorothea]

GREAT NEWS! Dr. Manley (peds oncologist from Dana Farber) called about five minutes ago. THE TUMOR IS UNCHANGED - MRI RESULTS ARE STABLE!! YEA!! Thank you, God! Thank you, Saints, and all my friends and family for your prayers!

 

[RKO]

GREAT NEWS! Dr. Manley (peds oncologist from Dana Farber) called about five minutes ago. THE TUMOR IS UNCHANGED - MRI RESULTS ARE STABLE!! YEA!! Thank you, God! Thank you, Saints, and all my friends and family for your prayers!

Thank God!
Dorothea, I never knew you and your family were struggling with this. I will keep you in my prayers.

 

[Dorothea]

Thank God!
Dorothea, I never knew you and your family were struggling with this. I will keep you in my prayers.

It started when he was about 2 weeks old (sporadic spitting up - dr told us colic), at 6 months, his left side of his face started to really droop. By ten months, he was throwing up at least 3 times a week. Got him into the local base clinic and asked about the vomiting. The doctor there said some type of stomach virus. I asked, "for two months?" Anyway, we were getting ready to move up north to WA State, so I said I'd get him looked at when we got up there. We got up there after our long drive, and all went in to get checked for colds/sinusitis and such, and then I asked the PA at the base what did he think was wrong with C's face. He said it could be bells palsy, but referred us to Madigan Army Hospital in Ft. Lewis, in western WA, so we got an appointment on Oct. 29, 2003. They got an CT scan after much soothing of him (he was 13 months then), and just before we were headed to leave out the door of the hospital, they called us over the P.A. I knew it was bad news. Deep down. Hubby suggested we forgot something, even though he knew it was not good news, but think he was trying to comfort and calm me. I thought in my mind it was a brain tumor before the nurse told us in the clinic office, but it still was a shock and devastating. Anyway, it was/is a benign tumor attached to his brainstem.

They referred us to Seattle's Children Hospital (excellent hospital). We stayed the night at Madigan, and left for the children's hospital in the morning. It was a blur to me. Don't remember much. Got there and he was set for surgery November 3. We stayed two blocks away at the Ronald McDonald House (Godsend for families). He had the surgery, which removed a good amount, but not too close to the brainstem because the closer they go to the brainstem, the lower his heart rate goes, and it will kill him if they do anything on the brainstem. Hubby stayed with him the couple nights in ICU because I didn't have the courage or heart to do so. I could barely stand to see him all hooked up to tubes, and the beeping of the machines scared me to death. They moved him to a regular room, and spent 18 hours crying continuously because of: a) noise, b) light. It was hard. My mom and dad were with us then. Mom was a Godsend. Stayed with him through that. I was in and out. It was very hard for me to bear, and I felt guilty not being present more than I was. But I managed to forgive myself years later, even though it still bothers me.

The brain tumor was nearly 5 cm in diameter. It affected much of his brain in the area where it was in his cerebellum. He lost his ability to swallow after the first surgery. There's more to this than that, like the leaking of brain fluid from the stitches in the back of his head, the ventricular tube placement nightmare (where there was a scale set next to it that connected the tube to the machine from his brain that anything he was to lie down, they had to turn off the tube and move him, then turn it back on, and vice versa when he wanted to sit up...if it was done without stopping machine and done suddenly and too long, he would be dead either way - too much fluid in the brain or too little in the brain), and had to restitch him up to fix that. Did nine months of intensive therapy where his smile and droop was nearly gone, and he was eating small amounts of foods like yogurt and sucking on lollipops, and eating goldfish crackers, etc. after much work with his mouth via speech therapist who also did OT (occupational therapy). The first several months home from the first trip to the hospital for surgery was what I described above. It was a nightmare. We hated to have him go through g-tube surgery, but it turned out the right decision because he was able to stop throwing up at night and we didn't have to suction him,... but that was after I disregarded the dieticians stats on how much C needed of the pediasure and fed him three boulos feeds a day of the amount I believed he could take in without throwing it back up....she said it would be fine as long as he is gaining weight...he stopped throwing up and was gaining weight).

But by January, that scan showed growth of the tumor again, and so we were back over to Seattle (5-1/2 hr drive from Spokane - lived at Fairchild AFB close to Spokane at the time). Surgery was Feb. 8, 2005. It was to follow with radiation therapy. The docs like to wait until the child is at least three, but they felt it was really urgent that it be done then after the surgery to keep it from growing back. The tumor also produces cysts that grow as well, but they are less dangerous, but still, if they grow a certain size, must be drained. Anyway, had the surgery, which was more aggressive this go around. We were worried he'd lose the progress of swallowing things - juice, crackers...he'd made such progress... - but thank God, when he came out of surgery, he was able to eat some crackers and juice once he was up and awake. He hadn't lost that, but the work on his droop and mouth was all lost and never came back. After the surgery, we went back to the RMH (Ronald McDonald House for recoop until radiation therapy, which was supposed to be two weeks after surgery). Unfortunately, he was picking at his stitches in the back of his head in his crib at night while we were sleeping. It caused a serious infection in which it was some infection that could get into his blood. They had to reopen his head and resew/stitch the back again, and so, we kept it covered with a gauze but not tightly so it could air out. The nurse told me to give him the antibiotics via his PIC line for five days. That was the hardest week ever. Because if I messed up in any way, pushed too hard, could blow a vein, didn't clean the area well enough, could cause blood infection. Ugh. Anyway, managed to get it done, and the infection was gone, thank God. Then, onto radiation therapy after that. Five days a week for six weeks, every morning, go in with him, watched Pooh Bear on the screen in the waiting area inside the clinic area (not the regular waiting room), then back to the radiation room, watch the bubbles being blown by one of the nurses, and insert the knock out meds, where he'd pass out leaning his head against my hand on his forehead. Then, they'd bring him out still asleep and set him on my lap until he woke up. Tough time. I was again on autopilot. The effects of the radiation hit him two weeks into the therapy, and he was lethargic and throwing up terribly. Immediately called the docs, and they got him a prescript for steroids, which is what he took when came out of surgery to help swelling of the brain. He was fine once on that and got through rest of radiation therapy ok.

We went home after that, and he was off the g-tube several months later, which was a HUGE milestone for us. He had regular therapies every week, three times a week until he was 7, I believe. He graduated from them at that time. He had regular MRI checkups/maintenance for the next several years, which were stable, except for the tumor producing cyst in spring 2007, for which he had surgery to drain it in May 2007. After that, it was MRI's every 4 months. Eventually it was every 6 months, and a couple years ago, it went to every year.

Still not sure what caused the headaches, but may be not sleep enough or not drinking enough suggested by the nurse practitioner and which we had discussed with him in the past that he doesn't drink enough.

Dr. Manley is planning to get him in for some blood tests to check his growth, visit with endocrinologist and neurologist in a month or so. He gets checked by an endocrinologist every couple years or once a year (that was the case in Denver). He's in the 25 percentile of below the regular growth, which was probably from the radiation therapy since that was a side effect that could happen but not a huge probability of it, seeing how the pituitary gland was close to the area radiation rays were zapping.

Anyway, that's the whole story basically. I'm going to save this so in the future I can just post this for those who don't know or want to know.

 

[Anhelyna]

Thank God for He is good and merciful.

That's absolutely brilliant news Dot - I bet you feel you can breathe again

 

[Dorothea]

Thank God for He is good and merciful.

That's absolutely brilliant news Dot - I bet you feel you can breathe again

Yes, indeed. As far as the headaches and sitting up while sleeping, it may be due to what the nurse practitioner said and we initially thought - not enough water/liquid or sleep. I'm leaning toward lack of liquids.

 

[RKO]

Dot that is such an incredible story. I don't know why God gives us suffering that we would have never believed we could handle, but he has certainly carried you and your family through it. be assured of my continued prayers, my friend.