If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.
If God had told me, "this soul will one day need extra care and needs", I still would have chosen you...
If He had told me, "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me, "this soul would make me question the depth of my faith", I still would have chosen you...
If He had told me, "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you...
If He had told me, "our time spent together here on earth could be short", I still would have chosen you...
If He had told me, "this soul may one day make me witness overbearing suffering", I still would have chosen you...
If He had told me, "all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Author Unknown
Friday, February 26, 2010
I still would have chosen you
I came across this poem, and thought it was just perfect..
Wednesday, February 17, 2010
Chemo treatment #7 down-12 more to go!
Pretty uneventful appointment. We went in at 1:00 p.m.. ran down to the Pharmacy in the basement and dropped off his prescription for his Glutamine powder. Back up to the 2nd floor for Chemo.
Weight: 9.7 kg - down 1 lb 1 oz from last week. I am very, very surprised he lost so much weight. I really, really thought he would be up from last week since the diarrhea has come to a halt, and he has been eating more. So confusing, yet frustrating at the same time.
His nurse came in shortly after his vitals, with the Vincristine, Dactinomycin, Zofran and a 100 ml bag of fluids. Whenever you see that bag of fluids come in, you know your gonna be there for a while. She proceeded to access his port, and pushed through the Vincristine. Followed by the Zofran which was pushed through the IV for 10 minutes, then came the evil Dactinomycin, which was pushed through over 15 minutes. She came back in and started the IV bag of what I call "juice".
Mary, the NP, came in between all of this and we chatted for a bit. She said that his fluid intake is definitely not where he should be (he drinks no more than 20 oz a day). It would be fine, IF he was eating like a normal child, but, still, when you have one kidney working solo, you need to drink as much as possible - regardless. So.. we really need to work on pushing fluids on our little guy, which is a big problem since he hates any sort of 100% juice. He will drink a scant amount of Gatorade, and some water here and there.
I mentioned to her that we are getting little to zero sleep at night, and it doesn't help much when he kicks and kicks all night long. She pretty much flat out told me that she didn't know why he was doing this and to try and give him some Tylenol before bed. (Not in a mean way, she just didn't have an answer for me!) It could very well be that he is experiencing pain, but we don't know where. Well, I didn't feel particularly comfortable giving it to him last night since he was pumped full of so many drugs yesterday. How much can his little body tolerate, seriously. We will try tonight, and see how it goes. We are going to discuss our options next week, due to the weight loss and limited intake with food/liquids and also the night time pain issue.
Went back down to the basement to pick up the Glutamine (which his insurance did not cover, by the way. Had to pay cash, wonderful!) The appointment took nearly 3 hours from start to finish.
ANC: 2,110
WBC: 5.7
Hemoglobin: 10.3
Platelets: 573
Next appointment set for Wednesday, the 24th.
On a side note: He is cutting his first top front tooth, on top of all the other effects he is feeling from the chemo. My poor little guy is a miserable wreck!
Sunday, February 14, 2010
Sleep and Appetite
You lose some, but you gain some.
Sleep seems to be non-existent. We are both (Mommy & Isaac) running on fumes at this point. Exhausted! He wakes up it seems every hour, whining, tossing and turning. I just wish he could tell me what he is feeling so I could try and make it better.
Appetite has improved greatly within the past 3 days. He has eaten so much more than what he has been in the past few weeks. Unfortunately, I do not expect this to continue since he will be receiving both V & A this Wednesday, but I am happy he is stocking up on calories for now.
Poo has been great! No more than 1-2 a day. An awesome improvement!
Sleep seems to be non-existent. We are both (Mommy & Isaac) running on fumes at this point. Exhausted! He wakes up it seems every hour, whining, tossing and turning. I just wish he could tell me what he is feeling so I could try and make it better.
Appetite has improved greatly within the past 3 days. He has eaten so much more than what he has been in the past few weeks. Unfortunately, I do not expect this to continue since he will be receiving both V & A this Wednesday, but I am happy he is stocking up on calories for now.
Poo has been great! No more than 1-2 a day. An awesome improvement!
Wednesday, February 10, 2010
Chemo treatment #6 down - 13 more to go
Our appointment was at 1:30 p.m., and we were up and out of the house by 12:30 p.m. Arrived in OPI, and the nurse went ahead and took his weight before sending us into the room. (Good idea!) Weight: 10.1 kg - He was 10.3 kg when we left the hospital on Friday.
Get into the room, and she takes his bp: 106/76 - awesome!
A different NP, whom I have never met before comes in. Sorry to be so blunt, but she was not the brightest light on the block. She made me really nervous, as it seemed like she did not know what she was doing. She comes in with a mask, and asks why we are wearing them... I mean... there is a sign outside the door and it's everywhere in his chart! She does not even gown up, and she is talking to me with the mask hanging halfway off her face. Umm... okay!! She then just continues to ask some goofball questions.
Anyhow, she leaves eventually, and his nurse comes in with her box of tricks.
She draws labs, and proceeds to infuse his Vincristine. I mentioned to the NP that Isaac has been extremely queasy, so she orders a IV push of Zofran. The nurse did not have the Zofran ready or anything to tape down his port site, so I had to sit there with him - in all needle glory - with him thrashing and screaming for 15 minutes while she "ran" to get something to tape it down. Holy hell. It's not easy trying to hold a 9-month-old on your lap and keep his hands from grabbing at his line.. oh.. and the syringe of Saline hanging from it. He was MAD. All the while, another lady comes in and offers us to participate in another clinical trial, so while she is explaining what and why's, her words are going in one ear and out the other while I hold down my screaming Mimi. I think she took the hint, and told me she would leave the paperwork for me to take home and read myself.
On the downside, his ANC levels have fallen to 2,000. On January 26th, they were at 4,600. Anything under 1,500 will put his chemotherapy at a temporary halt. He goes back in for blood counts on Tuesday, to determine if he will receive chemo on Wednesday (A & V).
Get into the room, and she takes his bp: 106/76 - awesome!
A different NP, whom I have never met before comes in. Sorry to be so blunt, but she was not the brightest light on the block. She made me really nervous, as it seemed like she did not know what she was doing. She comes in with a mask, and asks why we are wearing them... I mean... there is a sign outside the door and it's everywhere in his chart! She does not even gown up, and she is talking to me with the mask hanging halfway off her face. Umm... okay!! She then just continues to ask some goofball questions.
Anyhow, she leaves eventually, and his nurse comes in with her box of tricks.
She draws labs, and proceeds to infuse his Vincristine. I mentioned to the NP that Isaac has been extremely queasy, so she orders a IV push of Zofran. The nurse did not have the Zofran ready or anything to tape down his port site, so I had to sit there with him - in all needle glory - with him thrashing and screaming for 15 minutes while she "ran" to get something to tape it down. Holy hell. It's not easy trying to hold a 9-month-old on your lap and keep his hands from grabbing at his line.. oh.. and the syringe of Saline hanging from it. He was MAD. All the while, another lady comes in and offers us to participate in another clinical trial, so while she is explaining what and why's, her words are going in one ear and out the other while I hold down my screaming Mimi. I think she took the hint, and told me she would leave the paperwork for me to take home and read myself.
On the downside, his ANC levels have fallen to 2,000. On January 26th, they were at 4,600. Anything under 1,500 will put his chemotherapy at a temporary halt. He goes back in for blood counts on Tuesday, to determine if he will receive chemo on Wednesday (A & V).
Monday, February 8, 2010
Hospital stay - quick recap
Isaac was hospitalized from Friday, January 29th to Friday, February 5th.
We went in for his regular chemo appointment on that Wednesday, January 27th. He was still having diarrhea, so he received 100 ml's of fluid before his therapy was administered. I had taken stool samples into Quest the week before, and they ended up coming back all negative.
Fast forward a few days to Friday. His diarrhea had significantly increased from 3-4 times a day to 6-7 times. He just didn't look right. He was very lethargic, whiny, and did not want to be put down. He also had a white cast to his face - very pale, and his eyes had purple circles under them. I decided to make a call into the Oncology unit, and they advised me to bring him in right away. This was around 11:00 a.m., and we got there a little before 1:00 p.m.
I had applied EMLA to his port site before we left, because I knew that he would be accessed. They weighed him, and he was down nearly 1.5 pounds from that Wednesday. He lost 1 1/2 pounds in less than 2 days.
They accessed his port and drew labs. They also immediately hooked him up to some IV fluids. We were not in the OPI unit long, before the Oncologist (Dr. Shen) came in and let me know that they were in the process of having him admitted.
Around 5:00 p.m., we were eventually moved up to the 3rd floor, Oncology, room 331.
On that same night, he ended up stepping on his IV line standing in his crib and yanked it right out of his chest. His nurse was running down the hallway gathering all the necessary equipment to re-access. They have to re-access quickly since the blood in the catheter clots within minutes. Since the line was not hep-locked prior to removal, it may develop a blockage. He then had to have his very first (and praying the last) access to his port with NO EMLA. No EMLA = pain. His nurse came in with the charge nurse, so I opted to step this one out and left the room. I knew I would have probably lost it. Of course, I could hear his screams from the hallway, and it didn't make it that much easier. His IV was a little boggy and would occlude, so she had to flush it 3 times before the fluid would flow freely after re-access.
During his stay, they ended up checking his stool for various different tests, including the same ones done the week before, and also for parasites. Everything came back good!
It all came down to the Oncology doctor and the GI specialist agreeing on what the right course of care would be. The Oncologist wanted Isaac to be scoped and have a section of his colon biopsied, but the GI specialist did not feel it was 100% necessary.
They ultimately decided (for now) that the chemotherapy is the culprit of the diarrhea. They administered a dose of Imodium and it seemed to do the trick (again... for now).
Can we get off the rollercoaster, now?
We went in for his regular chemo appointment on that Wednesday, January 27th. He was still having diarrhea, so he received 100 ml's of fluid before his therapy was administered. I had taken stool samples into Quest the week before, and they ended up coming back all negative.
Fast forward a few days to Friday. His diarrhea had significantly increased from 3-4 times a day to 6-7 times. He just didn't look right. He was very lethargic, whiny, and did not want to be put down. He also had a white cast to his face - very pale, and his eyes had purple circles under them. I decided to make a call into the Oncology unit, and they advised me to bring him in right away. This was around 11:00 a.m., and we got there a little before 1:00 p.m.
I had applied EMLA to his port site before we left, because I knew that he would be accessed. They weighed him, and he was down nearly 1.5 pounds from that Wednesday. He lost 1 1/2 pounds in less than 2 days.
They accessed his port and drew labs. They also immediately hooked him up to some IV fluids. We were not in the OPI unit long, before the Oncologist (Dr. Shen) came in and let me know that they were in the process of having him admitted.
Around 5:00 p.m., we were eventually moved up to the 3rd floor, Oncology, room 331.
On that same night, he ended up stepping on his IV line standing in his crib and yanked it right out of his chest. His nurse was running down the hallway gathering all the necessary equipment to re-access. They have to re-access quickly since the blood in the catheter clots within minutes. Since the line was not hep-locked prior to removal, it may develop a blockage. He then had to have his very first (and praying the last) access to his port with NO EMLA. No EMLA = pain. His nurse came in with the charge nurse, so I opted to step this one out and left the room. I knew I would have probably lost it. Of course, I could hear his screams from the hallway, and it didn't make it that much easier. His IV was a little boggy and would occlude, so she had to flush it 3 times before the fluid would flow freely after re-access.
During his stay, they ended up checking his stool for various different tests, including the same ones done the week before, and also for parasites. Everything came back good!
It all came down to the Oncology doctor and the GI specialist agreeing on what the right course of care would be. The Oncologist wanted Isaac to be scoped and have a section of his colon biopsied, but the GI specialist did not feel it was 100% necessary.
They ultimately decided (for now) that the chemotherapy is the culprit of the diarrhea. They administered a dose of Imodium and it seemed to do the trick (again... for now).
Can we get off the rollercoaster, now?
Saturday, February 6, 2010
Friday, February 5, 2010
Wednesday, February 3, 2010
Chemo treatment #5 down - 14 more to go / Update
Going on day 6 since he was admitted in the Oncology unit. It is so hard to spend day-in and day-out in that tiny, itty bitty room. I hate the fact that he is cooped up 24/7. You see other cancer children able to walk the halls, taking rides in the wagon, and playing in the playroom. But, we can't do none of that since he is in isolation. He is either in my arms or in his crib, so it is very difficult to get through each day. On my way back to the hospital yesterday, I stopped off at Toysrus and picked him up a ABC playmat, and a bunch of new toys. (Toys get old quick when you are playing with the same ones ALL day!) He absolutely loved being back on the floor able to move about. He does try to sneak off the mat every once and a while, but he is held back by his IV line (and Mommy!).
He had an x ray of his belly on Monday evening (at 10:30 p.m. nevertheless!) and it came back clear! No obstruction. Grandma said that during the whole procedure, Isaac was saying, "ut oh!" He was great, and did not cry.
He had his 5th chemotherapy treatment today. Vincristine only.
Doctor's are still baffled about the cause of the diarrhea and are really leaning toward it being chemotherapy related, but are not really sure how to go about treating it. They have tested his poopies 3 times, and everything keeps coming back negative.
His appetite is still horrible, but we are working on it. We are hoping to be home, soon.
Oh! I bought Isaac his first bottle of bubbles. Do you think he liked them? : )
He had an x ray of his belly on Monday evening (at 10:30 p.m. nevertheless!) and it came back clear! No obstruction. Grandma said that during the whole procedure, Isaac was saying, "ut oh!" He was great, and did not cry.
He had his 5th chemotherapy treatment today. Vincristine only.
Doctor's are still baffled about the cause of the diarrhea and are really leaning toward it being chemotherapy related, but are not really sure how to go about treating it. They have tested his poopies 3 times, and everything keeps coming back negative.
His appetite is still horrible, but we are working on it. We are hoping to be home, soon.
Oh! I bought Isaac his first bottle of bubbles. Do you think he liked them? : )
Monday, February 1, 2010
Update, Monday, 2/1
Isaac is still in the hospital - going on day 4.Thankfully, his Grandma (my Mom) was granted permission to come and stay with him for the night, so I could come home and shower. (And eat. And sleep.) They do not allow any other visitors besides for parents/guardians due to the h1n1 outbreak - totally understandable. Daddy is in New Hampshire on business for 4 weeks, and cannot be here to help.
It has been a rough 3 days. He has been hooked up and is being pumped full of fluids 24/7. Yesterday, he had 8 diarrhea explosions. I mean e-x-p-l-o-s-i-o-n-s. He saturated his crib from end to end twice and needed brand new bedding.
His appetite is nil, and when he does eat a little something, it comes right out within 10 minutes. He is on a gastro diet. He turns away to any sort of food they offer, but he is drinking formula. No as much as he should be, but anything is something at this point.
The GI doctor came in today, and basically said that the diarrhea may be caused by a few possibilities. 1.) A small part of his bowel may have become twisted during surgery to remove his kidney and tumor 2.) Colitis or something to that manner 3.) 100% chemotherapy-related.
He is ordering an xray for tomorrow to rule out a blockage. If there is no blockage, then they will possibly take a biopsy of his colon to rule out no. 2 above. If that is okay, then most likely it is no. 3, and they will then give him medication to hopefully put an end to the diarrhea. They do not prescribe anything for the diarrhea without ruling out other possibilities first.
This is all in a nutshell. I am writing this on VERY little sleep and may sound jumbled. The nurses come in all hours of the night, and wake him up every 2 hours to take vitals. It is the most frustrating thing ever to JUST get him back to sleep, and finally get a chance to lay down, and they are back! That. Quick. They woke him last night, just to change a small pee diaper. I mean, c'mon now! Just because they are used to being awake at night, does not mean WE are!
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