We were discharged this morning at 10:30 am. We are finally back at home again! Adam is recovering well from his surgery. We are still waiting for a big poopy diaper but he’s passed a lot of gas already, which is a good sign that his bowels are moving ?
The nutritionist came by last night and was concerned that Adam is not gaining adequate weight. He’s a cancer patient who vomits when he’s not feeling well and neutropenic, but he eats well when his counts are up again. So what’s the solution to get a baby on chemo treatment to gain weight? I’m not sure. First, they are recommending that we fortify his breastmilk with a small amount of formula. If anyone has any good suggestions for formula supplementation let me know. They’ve sent us home with Enfamil infant formula. We’ll see how this goes. He seems to be a really picky eater so my guess is that he’ll notice the change in taste of his breastmilk and refuse to drink, but let’s hope I’m wrong.
For now, we are enjoying just being back at home for a couple days before going back to the hospital for our next visit. We thought the surgery was going to set him back from his crawling for a few weeks but he’s right back at it already! We are over the moon.
Today, Adam is enjoying spending some quality time with Dada on his birthday. (Dad’s birthday, that is ☺) And the best birthday gift was being discharged from the hospital!
Thank you to everyone who has been praying for Adam’s surgery and recovery. Because of your prayers, Adam has been doing so well. If you can, please also say a prayer for our friends, the Hammersleys, who we recently met at the hospital a few weeks ago. Their daughter Hazel, (age 7) had been battling neuroblastoma for 5 years and lost her battle with cancer yesterday morning. Even though we don’t know them well, this hits so close to home. As part of the neuroblastoma family, we are heart broken, and our heart goes out to them. Please keep them in your thoughts and prayers. ?
As of last night Adam was allowed to begin eating. We started him out slowly, and he’s ramped up this morning. He’s had 12 oz to eat this morning. His nausea seems to have subsided, and he’s now disconnected from all the tubes and monitor wires. He has been switched to oral pain meds in preparation for us being able to take him home. There has been talk of possible discharge by tomorrow. We hope that happens.
We’ve had visitors from all over the country!
It’s now been almost 36 hours since Adam has had any food. The doctors do not want him to eat anything until they know his intestinal tract is functioning properly. We are hoping they regain function very soon because as you can imagine, Adam is STARVING. He’s tried vomiting a few times this morning, and last night he vomited a little of whatever was left in his stomach, so the doctors ordered an abdominal x-ray. The x-ray showed a lot of trapped gas in his belly. They may need to put a tube down to remove the gas.
Surprisingly, our brave little warrior slept through the night well, with almost no crying, so I got more sleep than anticipated. The night nurse expected him to be crying all night and was shocked to find him asleep for most of the night. He’s been soothing himself as much as possible, by sucking on his fingers, like such:
Mark and I are doing OK. The night before the surgery we both didn’t get much sleep, but last night was better. During the surgery yesterday, we were also able to spend some time praying for Adam’s procedure while enjoying a nice breakfast together at a little cafe down the street.
Adam will need to either pass gas or have a bowel movement before he is able to eat. This will confirm that his intestinal tract is back in working order. His bloated belly will also need to improve, otherwise anything he eats will be vomited. Please pray that Adam will be able to eat very soon.
Just a brief update-
Adam’s surgery was successful. We arrived at the hospital at 5:30 am, he entered the OR at 7:45 am and was in recovery by 11:00 am. The surgeon was able to fully remove the tumor without any complication. Biopsies of the liver and the bone marrow were also successfully completed.
The anethesiologist was originally going to put an epidural in, for post-surgery pain management, but when they inserted the needle, there was a lot more bleeding than expected so they decided to use IV pain medication instead.
Adam has been in and out of sleep for the last few hours. He is not allowed to eat anything for at least the next 12 hours so that will be the biggest challenge for now – to keep him comfortable and not eating.
More updates later. THANK YOU ALL so much for praying for us this entire morning. The Lord surely supplied us during this time, and cared for Adam in the best possible way. ??? Below are photos from before and after surgery.
Adam will be undergoing a surgery tomorrow (Wednesday, 3/28) to remove the primary tumor by his adrenal gland/kidney area. This tumor is a little bigger than a golf ball, and will be a rather complex surgical procedure with a lot of blood vessel and organ involvement. It will be an open procedure with a 4-6 inch horizontal incision in his abdomen.
Additionally, one of the cancererous areas of his liver will be biopsied in the event that his tumor is necrotic (dead) and they are unable to obtain a viable tissue sample. A bone marrow sample will also be taken from his hip bones so they can analyze how much cancer still remains in his bones.
The procedure will begin at 7:30 am, but we need to check in for surgery prep at 5:30 am. Adam also needs to fast starting at 3:30 am.
Please pray for:
- The surgeon and the surgical team
- A clean removal of the tumor, with no damage to any blood vessels or surrounding organs
- That 100% of the primary tumor could be removed
- That Adam would tolerate the procedure well, not be in too much pain, and be able to recover quickly
- That Adam would regain his eating again after the surgery (he’s been eating well all week)
- That we wouldn’t have to stay too long in the hospital (minimum will probably be 3 days, maximum one week)
- That we would not be too anxious or worried, but rather we would trust in the Lord to care for Adam before, during, and after the surgery
We love you all and thank you for continuing to pray for us. ?
Last Thursday Adam had another routine blood draw. This time he did not need any transfusions, which means he’s on the upswing!
He’s been sleeping well and eating more. Hopefully he gains weight, since he’s plateaued the past couple months.
On Monday, March 26th, we have an appointment with our primary oncologist, then on Tuesday we have a consult with a surgeon, and potentially Adam may undergo a surgery on Wednesday to remove the primary tumor. This is based on the CT imaging that was done a couple weeks ago that showed that the tumor had begun to shrink, and his organs are returning to their normal positions. Since the last biopsy was unsuccessful, and eventually the surgery to remove the primary mass would have to be performed anyway, the doctors are recommending that we proceed with this now, so that hopefully we can have an accurate diagnosis soon.
After the surgery, Adam will have a few days to recover before beginning the next round of chemo. This coming round will be 3 back-to-back days of outpatient chemo.
For the time being… he’s home and happy 🙂
We were discharged from the hospital last night (Sunday) around 6:30 pm. We are home now! ☺
As mentioned previously, the doctors had been monitoring the following 3 things before we could be discharged:
- ANC (neutrophil count- immunity)
- No bacterial growth in blood culture or recurring fever
Regarding his eating…
Adam was taken off of IV fluids Sunday morning to see how well he eats throughout the day. The doctors wanted to make sure he eats and does not vomit. Adam ate 17 ounces yesterday which was an improvement from the days before, and he hasn’t vomited in the last 2 days.
Regarding his ANC…
His ANC has been slowly increasing over the last few days. On Friday, his ANC was non-existent. Yesterday when we were discharged, it was 280. He is still neutropenic but the doctors were happy to see that his immunity is on the upswing. We are continuing to give him injections until his counts are higher.
Regarding any bacterial growth…
Blood cultures were drawn Friday morning as soon as Adam was admitted into the ER, to see if there was an infection in the blood. It takes 48 hours for the final culture results to come in. By yesterday morning, the blood cultures were negative; as well as the other nasal swabs and stool samples they took to check for possible viruses. All came back negative, which is good news. He also hasn’t had a fever since Friday night when he was admitted into the ER.
Since Adam showed improvement in all 3 areas, we were discharged last night. His platelets are still very low, but the doctors don’t think he needs any transfusions since he is not showing any signs of bleeding. (There’s always a risk with any blood transfusion so the doctors try not to infuse unless absolutely necessary). We will go back to CHLA this afternoon for Adam’s scheduled blood draw appointment and dressing change.
Some other good news, he was taken off his daily blood pressure medication, yay! His BP has been normal the last few days so the doctors did not think he needed it anymore.
On another note, our sweet boy turned 9 months old a few days ago! On Friday he started crawling (good day to start ?) and he can sit up on his own now ?
The days of being apprehensive of leaving the hospital are gone. Home is so much better.
Aside from Adam’s fever, the ER doctors were also very concerned about his lethargy, elevated heart rate and labored breathing, so we were on hold in the ER until they could determine the cause. We were potentially being considered for admission into the ICU. They did more blood work to see if there was any indication of respiratory issues in his blood chemistry. Adam also spiked a fever last night of 100.3F around 6:45 pm, but the Tylenol and blood transfusion seemed to help him regain some energy, lower his heart rate and decrease his temperature. After seeing this change, the ER doctors were comfortable with sending us upstairs to Oncology rather than ICU, realizing that the respiratory issues were a result of his anemia and low hemoglobin.
We were admitted to the oncology floor around 9pm last night, and he was able to sleep from about midnight to 8:00am with only one interruption. The doctors aren’t sure what caused the fever. The virus swab came back negative for all viruses that they test for, and the blood culture is negative for bacterial infection so far. He is not eating much, and vomiting occasionally, so he’s on some maintenance IV fluids to keep him hydrated. Each child reacts a little differently to chemo, so it’s possible these are the side effects that manifest with him.
The areas that need to improve before we can be discharged are:
- ANC (neutrophil count- immunity, WBC)
- No bacterial growth in blood culture or recurring fever
In the mean time, Adam will be kept on antibiotics until discharge. He was very energetic and didn’t nap all morning, but is sound asleep right now.
Adam’s eating has recently declined and he has not been eating well the last 3 days. Less than 15 ounces a day.
Yesterday, Adam had a CT scan scheduled in the morning. He was required to fast since 5:00 am until the scan was complete, so he had not eaten anything all morning. But after trying to give him some anti-nausea medication, he vomited up some stomach acid and blood, which can indicate low platelet count. The radiologist wanted him to drink an oral contrast diluted with 7 ounces of pedialyte (breastmilk not allowed). He would not drink any of it and after 4 hours of waiting and trying, they decided to do just an IV contrast (thru his central line) and then finally did the CT scan early afternoon, which took just a few minutes. The purpose of the CT scan is for the doctors and surgeons to see the location and size of his primary tumor in proximity to his critical organs. This would allow them to determine whether it is safe to proceed with a biopsy and possibly surgery to remove the tumor.
While waiting to do the CT scan, the nurses did a blood draw. Lab results indiated a low platelet count and non-existent white blood cell count (i.e. neutropenic). At 2:30pm, Adam received a platelet transfusion. We returned home around 7:00pm and he slept through the night without waking up to feed.
This morning, he vomited shortly after waking up and trying to feed. There was no blood in his vomit this time. He has been sleepy and lethargic all morning and his heart rate is elevated. We checked his temperature this morning at home using three different thermometers which gave us all different readings but appeared to be a fever; and coupled with his other symptoms we knew something wasn’t right.
Adam was admitted into the ER at CHLA this morning for a low grade fever (100.3 F or 38 C) and he received antibiotics right away. Adam will likely be admitted into the hospital for a few days, pending results of his blood work this morning. This is protocol if he has a fever and is neutropenic. We are still waiting to speak to the doctor.
Please pray for us. We will try to provide updates later if we are able to.
After every chemo cycle, Adam will undergo a series of blood draws every 3 days so the doctors can determine whether he needs any transfusions, depending on his blood cell counts. The blood draws will continue until his cell counts recover from the chemo treatment. At that point, he would likely be ready to begin the next chemo treatment. Adam had his first blood draw yesterday since his 2nd chemo cycle last Tuesday.
After the blood draw, we waited about 1 hour for the results and he did not need any transfusions this time. His red blood cell counts were slightly below normal but not low enough to require transfusion. His white blood cell counts were also very low but this is not something that can be helped by a transfusion. Adam needs to produce his own white blood cells, which the injections are supposed to help with. Right now he is considered ultra-neutropenic. For those of us non-medical professionals, neutropenia is a condition where the white blood cell (WBC) count is extremely low, and WBCs are what helps the body to fight off infection.
While at the hospital we also had a CVC (central venous catheter) specialist come to take a look at his dressing to see if the redness was concerning. She noticed Adam’s skin was a little red when the dressing was removed. The adhesive may have been causing his skin to be irritated. The good news is, he doesn’t appear to have any infection or allergic reaction to the adhesive. She re-did his dressing and put a smaller dressing on, which fits him SO much better. The other one was way too big. Smaller dressing = less adhesive and hopefully less skin irritation. We will follow up with the CVC specialist again next week.
How’s his eating? Adam is still showing zero interest in solid foods, but his breastmilk drinking is doing well and increasing a little every day. He likes his new high chair, and we hope these budding teeth will make him want to start eating solids soon.
Some disappointing news- apparently the pediatric home care nurse that we thought would work out has informed us that they no longer can provide the service we need. Back to square one. Please continue to pray for this.
We are back at home again, and will be back to the hospital on Thursday for another blood draw. Thank you so much to everyone who has been following these updates and constantly praying for us! Adam has been doing well so far and there seem to be less side effects with this 2nd round of chemo. Though we don’t have any big news to report this time, we are so thankful for these small victories each day and every week.