Fear

The fear is overpowering, it is overwhelming. The not knowing of what the future will bring. I think of Isaac every moment of every second, it's like an obsession. You can't help but feel that you have to give him all of your time and attention, all the cuddles and snuggles that he can stand, because one day, my ultimate fear is that this horrible beast will come back - with a vengeance - and snatch my beautiful child from me. Every fever, every cough, every sneeze is going to be agonizing, wondering if something is there. The CT scans, the wait and see. It seems like all we do is wait. What are we waiting for? Isaac has gone through more than many of us will in a lifetime. NO child should have to endure the pain, the horrible treatments, the ...... CANCER. I pray, that one day there is a cure. Maybe not tomorrow, or next year, but someday. Someday - soon.

As the days go by

Isaac is doing much better as the days go by. It has been 10 days since diagnosis, and 5 days since surgery. Night time has been a little challenging. He seems to be in pain more at night, than during the day. Kids are so resilient, thankfully. His appetite is slowly picking up. He does not want to drink as much as he used to, 3-4 oz (if we are lucky!) versus his normal 6 oz.

Here is our little man, in all his alligator PJ glory!

Day 8 - We are home!

We were able to bring Isaac home today! The Oncologist came in and said that he did not see no reason why we could not go home. Isaac is healing wonderfully, and is in minimal pain. It has been such a blessing to have him back. You forget about the minute things we take for granted. His crib is no longer empty. It is being occupied by my little miracle, my little hero. He has gone through so much this past week, more than most will endure in their whole lives. But, this is just the beginning...

They gave us 2 pages of telephone numbers to call just in case of an emergency. He has an appointment scheduled for the Oncology clinic on Wednesday, and we need to make an appointment tomorrow to visit the Urologist on Thursday.

Last minute nap in his hospital crib while we got our discharge papers complete...



Happy to be back home!

It didn't occur to me

I have not been doing a whole lot of research about Isaac's condition in fear that it will bring more stress than what we are already going through.

Since I have been home for the past few days, I have a little more time to myself that I need. (No baby to run after... Christmas gifts and family visiting kept my other 3 pretty busy...) So, there I sat - reading and reading and reading.

I realized the rarity of this cancer. Out of the 60 million children living in the United States today, it only affects 500 children per calender year. The odds of my child being 1 of those 500... Perhaps I should go buy a lottery ticket tonight?

Day 7

Merry 1st Christmas to my sweet baby Isaac.

I went home last night, so I was able to spend Christmas morning with our other munchkins. It was hard leaving Isaac, but I know that he is in good hands - with Daddy and the nurses. Thankfully, he does not know what Christmas is, and it will pass as any other day would with him.

Daddy said that they came in at 1:30 am., and removed the IV in his foot. It was backing up with the IV fluid and was causing him a lot of pain.


They then removed his arterial line at 5:30 a.m.,


to which it left a large blister. He is guessing it is from the splint.

The catheter was removed at 8:15 a.m.


He said they also took him off the ECG, and pulse oximeter. I am so glad he is free of all those wires!

He did good all night, and only had Tylenol with Codeine.

They moved down to the oncology floor at 7:45 a.m.

An oncologist (one of the many) came in and said that we may be able to take him home this weekend! As long as he is healing as he is now, he feels there is no reason we have to stay since there is nothing they can do for him treatment wise at this point. He said that we can wait it out at home for the Pathology report, and bring him back when we have a treatment plan. That is awesome news! It is so hard to walk in our room and see an empty crib. My baby should be in there, babbling at 5:00 a.m., letting me know that he is ready to start the day.

Daddy offered for me to stay home for another night, reassuring me that everything is okay with Isaac, and he can manage. I was hesitant, but obliged since I have gotten VERY little sleep in the past 7 days. I have lost 6-pounds within a week.

Day 6

Blood pressure was much better through the night and this morning. They are averaging 90's/40's. He is in quite some pain, so they are keeping him on the morphine every 3 hours around the clock.

The urologist came in, and said that he looks great. He mentioned the surgery went very well, and they were pleased. The kidney, adrenal gland, and a portion of his ureter was removed - along with a few samples of his lymph nodes.

He wants us to stay here in the PICU one more day. He is starting to wake up more, and stir a bit.

One of the oncologists came in and mentioned that he would possibly not need chemotherapy right away, and that they may monitor him instead. He said that they would do a CT scan every 3 months to see if the cancer has returned. I do not agree with that decision. I know that in 3 months, a tumor can grow quite large. Isaac was only 8 months old at diagnosis, and his tumor was huge. This will definitely be discussed at our meeting.

Day 5 - Surgery day

Surgery day. Isaac woke up at 4:45 a.m. I was hoping he would sleep a little longer, which would make our morning wait for surgery not as agonizing. My boy always has other plans in mind. At home, he wakes up between 5 and 6, so he wasn't that far off.

The transporter came around 8:10 a.m. It took a while for his nurse to get all the lines in place, so the transporter man had to wait.

By 8:30 a.m., we were down in short stay. We met the surgeon, the urologist and the anesthesiologist (Dr. Ho), and a few other nurses and doctors. The surgeon was a little irritated because we were late. (We had a nurse that was new to the job...) We signed all the consent forms, gave my precious a big hug and kiss, and they wheeled him through the double doors at 8:50 a.m.

10:30 a.m., a nurse came to let us know that all was going well, and that they had just started the surgery. For the first 1 hr + they were getting him prepped, inserting the central line, the IV, and arterial line.

11:30 a.m., Kidney along with the tumor is out. He is doing well.

12:30 p.m., Done. The surgeon came out to let us know that all went great. The tumor came out intact, along with the kidney. Everything was removed safely. We found out that the tumor was the size of a large orange/small watermelon. It most likely has been growing since birth, given the size. We now have to wait for the Pathology results to find out what type of tumor we are looking at.

A separate surgeon came out so we could sign some consent forms to have a Porta-cath inserted for Chemotherapy.

He was taken to the recovery room, then we finally made it back up to the PICU at 3:30 p.m.


He was in significant pain, so they gave him a dose of Morphine at 4:30 p.m.

We should be moving back down to the oncology floor tomorrow sometime.

Day 4

Uneventful night last night. Went well, actually. Isaac slept most of the night, which meant not many disruptions from the nurse - and Mommy was able to sleep a bit. (I think mostly because they are pretty busy on that floor...) BUT, his blood pressure is once again super high (150's), so they brought us back up to the PICU this morning at 6:00 a.m. They have upped his Labetalol, and it has come down a bit. His last pressure was 112/89 which is great considering the circumstances. They would like it to stay under 130.

Lots of random MD's come in. Most of them I am guessing just want to see him quickly and to get a feel at his tumor which is somewhat annoying. They do not really let you ask any questions. The nurses here are awesome. Such a great bunch of ladies - very compassionate. Everyone who comes in - Dr's and nurses - comment on his big bright eyes.

The lab lady came to draw blood for surgery tomorrow. Turned into a complete disaster. She poked him in the forearm, and started to draw blood. All of a sudden, I noticed that area below his bicep started to swell quickly. I asked the lady, "why is his arm swelling?!" Her response? "Uh, I don't know?" Oh, perfect. So, she removed the needle, then removed turnaqet. She still needed one vial of blood. She went out and called the lab and asked if she could do a finger poke to get the rest of the blood. They said okay. So, she comes back in and pokes his little finger. All hell broke loose. He started bleeding like crazy. The lab lady was getting so nervous, and could not keep up with all the blood that was coming out. She was saying, "oh my gosh, he is bleeding so much!" She was freaking myself and Gilmer out. Mind you, Gilmer is holding Isaac, and blood is dripping on the floor, on him - everywhere. She tells me to go and get a nurse. I call in the nearest nurse I see, and she helps us out. The blood was flowing.

THEN - Mister Isaac somehow pulled out his IV. He was receiving his last dose of Rocephin, and we noticed a little red wet spot in his crib, but were not sure where it was from. Gilmer was holding him on the rocking chair, and he felt something dripping. The drip turned into a blood waterfall. One of the really nice MD's came in and fixed us all up. But, the blood, oh the blood. We have seen a lot of blood today. Mommy went to take a shower while they re-inserted another IV. I was at the point of another break down and could not stay while they poked my baby for what it seemed to be the 100th time.

Last blood pressure was 125/87 at 5:52 p.m. Speaking of blood pressure, Isaac absolutely hates it. He fights it with all his mite.

His evening nurse gave him a nice, much needed sponge bath. I wanted him to be clean for surgery tomorrow, since we would not be bathing him again for the next few days.

Day 3

Still in the PICU, but we may be moving back down to the Oncology floor since his blood pressure has somewhat stabled. His readings are in the 130's/70's. The nurses are fantastic here. I could not ask for more. The nurse we had last night took Isaac for a walk, she made him a bottle and fed him, and had him outside at her station so I could sleep. Other nurses would come by and hold him as well. Helped me out tremendously, and I do not feel like a zombie like I did on Saturday from the lack of sleep.

Urologist came in today around 11:30 am, along with the social worker from Oncology. No new news, but we have a surgery date : Wednesday, December 23 at 8:30 a.m.

Also, we hit a small bump in the road. Isaac tested positive for MRSA. We are not sure how he got it, or if he has the actual infection or if it is "colonized". They will most likely start him on antibiotics soon.

Meanwhile, he is sitting in his crib, playing with his toys happily. He likes the loud noise the metal crib makes when he bangs his toys against it.

They gave him a IV dose of Rocephin for the MRSA. Everyone comes in wearing a yellow gown, and a mask. I have to wear a yellow gown only.

We moved back down to the Oncology floor at 7:00 p.m.

Day 2

During the night, we were moved to the PICU due to Isaac's blood pressure being so high. One reading was 156/103. I didn't even know it was possible for a 8-month-olds blood pressure to get so high. His pressure is higher than the average adults.

The nephrologist came in today. He told us that it really looks like the tumor is contained in the kidney, and does not look as if it has spread anywhere else. But, they will not know for sure until they perform the surgery and poke around a bit and look at his lymph nodes. The type of tumor also factors in. But, it is still good news. Probably the best news we have had so far. The surgeon may come in tomorrow or Tuesday. Still no word on when the surgery will be performed.

I went home today to take a much needed shower and to see my girlies. I miss them so much! I also packed a bag with some much needed clothes and such. It was so sad to see his little crib there - empty - with his little toys on my bedroom floor.

Gilmer went home around 8:15 p.m. to be with the girls. I don't want to screw up their normal routine too much, and I feel bad that both of us have been here. I know that they must be so confused. I am thankful they are on Christmas break for 2 weeks. Izabella is worried and I would hate for her to have to go to school everyday wondering what is going on.

Day 1 - Confirmation

I am extremely exhausted at this point. I did not sleep at all last night. All I could do was cry every time I looked over at my precious boy sleeping in his little white metal crib. He is so oblivious to everything. A CT scan is scheduled for sometime in the a.m.

At 9:45 a.m., they come and get us and wheel us over to CT. He was so cute, sitting in his little crib while we ventured down the halls, holding on to the crib railing. We get to CT, and wait. And wait. And wait. The anesthesiologist was busy with other patients. Great timing. You think they would schedule accordingly. We finally got our turn at 12:00 p.m. or so. Myself and Gilmer went in and watched as the anesthesiologist put him to sleep. We then went out and waited. (It seems like all you do is WAIT. Whether it is waiting for doctors to come, waiting for results, waiting for tests....) About 5 minutes later, the radiologist comes out a little worried and asks one of the most off the wall questions. "Was he born with one kidney or two?" Myself and Gilmer look at each other, very confused and worried. It took us a second or two but we manage to reply with a slight studder... "two?" You would think? Right? I mean isn't that what we are all supposed to have? So, that freaked us out, and again, my stomach just tightens up. (You think the ultrasound tech from the ER would have noticed and we would have been informed.) He goes and gets another tech and I can hear him telling him that he cannot see the second kidney. That tech is in there for all but 2 minutes. I peeked in the window of the control room, and he ran another scan, and there they were - both kidneys. He then zooms in on the left and sure enough, there it is - a large solid white "blob". I knew it was there because of what the ultrasound showed, but I was really hoping that the ultrasound tech was wrong. Another little while, and he is done. The anesthesiologist carried him out and layed him in his crib. We were then taken to recovery so he could wake up. We were in recovery for about 1 hour, and we were back up to our room at about 1:30 p.m.

The Oncologist showed up a while later. I slammed this poor lady with 5.5 million questions. She explained the CT results and told us pretty much what we all expected: Isaac has a 7.5 x 6.3 cm solid mass located on his left kidney. We are not sure what type of tumor it is, and will not find out until they go in to remove his kidney. We will have to wait for the surgeon to decide when this surgery will take place.

We moved to the 3rd floor - Oncology - room 333.

Now that I sit here and think about it, Isaac had a few symptoms that I had chalked up to possible teething - fever, and decreased appetite. He started rejecting Mommy's homemade food, which was unlike him.

Day 0

I called Dr. Bedoy's office at 8:00 a.m. The nurse was able to get us in at 10:30 a.m. She bagged him, and we waited about 20 minutes or so for him to pee. His diaper was fastened somewhat, and the bag was hanging out the bottom corner. I was holding him in a standing position, and I look down and sure enough - out comes a flow of red pee. I took off the bag, and met Dr. Bedoy in the hallway. All she said was, "I don't think we need anymore proof, but we will dip it anyways." They dipped it, and it was blood, obviously. She told us that he needed to be admitted, but the only problem was that we either had to go to Loma Linda, or CHOC, because the 2 nearby hospitals do not have pediatric nephrologists. She advised us that CHOC would be the best option, due to Loma Linda being mostly student doctor's and if it were her son, that she would definitely take him to CHOC. CHOC was the hospital that I was going to choose, since we had such a great experience with Alexis there. She gives us a prescription order, and a cup with his bloody pee and sends us on our way.

We go home first. It is about 12:00 p.m. Gilmer takes a trip down to Izabella's school and pulls her out early. We leave for CHOC at 1:30 p.m. We check into the ER at 2:20 pm, and we have a room by 4:45 pm. Things progress fairly slowly from 4:45 pm and on. At 6:00 p.m. the doctor orders some blood work, and they catheterize him and take a urine sample. The urine is red, and has little blood clots. All labs come back normal - no infections, kidney function is good, no anemia, etc. The doctor is a little baffled and you could tell she was a little apprehensive of what to do next. I know there was a little doubt, and she very could have well sent us home - but she decided to get an ultrasound of his kidneys, bladder and urethra. The ultrasound was performed around 9:00 p.m. They wheeled Mommy and Isaac down sitting on the gurney. Everyone passing by would comment on how cute he was and how big his eyes are. (EVERYONE, I mean everyone, says how big is eyes are. It's the first thing they say. They don't even say "hello", it's "Wow! Look at those big eyes!" He does well during the ultrasound, he was a tiny bit squirmy. I was able to see his right kidney great, but when she moved to the left kidney, all *I* saw was stomach, with a few visions of the kidney popping up here and there. The kidney looked a little small, but I just figured it was the way he was positioned. We were wheeled back into the room. I asked if Gilmer was able to come back - by this point, he was waiting in the waiting room for almost 5 hours by himself. They allowed him to come back, so I go and get him while some nice male nurse sits with Isaac while I go find him. Meanwhile, about 10 minutes later, the nurse from admitting comes in and explains that she is admitting him, and puts bracelets on myself and Gilmer. I questioned her as to why, but I think she thought that we had already known, when in fact the doctor had yet to come in - SO.. she was a little early on her part. I ran to the restroom and on my way back a male doctor meets me at the door, shakes my hand and we walk inside the room. (My stomach is knotting up as I type this...) The doctor turns off the TV and sits on the trash can. My heart sunk. I knew what he was about to say was not good. If it was, he would have just ran in, blurted all was well and sent us packing. You know that when they come in looking like they are going to stay for a bit, something is not right. He goes on to tell us that the ultrasound results were in fact "very abnormal". The tech found a 7 cm solid mass on his left kidney. My world was halted to a stop in a split second.

We were moved across the way to CHOC, and were put on the 5th floor - room 517. By this point, it is after 12:00 a.m.

They get us situated, vitals are done, the works. We are here to stay, and for who knows how long our stay may be.

We were unaware of what was to come...

I went to give Isaac his routine nightly bath. When I took off his diaper, I noticed that the inside gel was brown. I put him in the bath. He always pee's within the first few minutes, so I grabbed the cup that I use to rinse him off and caught the stream of urine in the cup. It was pink/brown. I finished cleaning him up, got him all dressed in his pajamas and made a phone call into Dr. Bedoy. I waited an hour for her to call back, then I called again. The operator was able to connect me with her directly the second time. I told her that I think Isaac is peeing blood, and if I should be concerned. (Obviously, yes). She didn't really tell me a whole lot, because it is hard to diagnose over the phone, but asked me to call her office and make an appointment the next morning, and that she would be in at 10:00 a.m.