Month: February 2018

The nurses are fighting over who gets to be his valentine today ♥. Obviously because he’s the most adorable little cancer patient here ?

Our little fighter is showing signs of improvement everyday. The doctors and nurses are all very happy with his progress so far.

His girth is measured every morning and his belly has gone down by 3 cm in just 2 days. He’s also lost 2 kg (almost 4.5 lbs) in 2 days. This means that all the extra fluid in his body is finally passing through and he’s not as bloated anymore. He was not able to excrete all the fluid before because things were still too squished in his tummy area his bladder was also being compressed and thus not emptying as it should. We also removed his oxygen tubes yesterday (hooray!) Since his belly is sliiiiightly less swollen, his breathing has also improved.

Another HUGE improvement is that he’s now able to lift his legs up and reach for his toes! Something he has not been able to do in weeks because of his enlarged abdomen and swollen legs, which made it way too hard to lift his legs up even a little bit. Here’s a pic of our little guy kicking his feet up in the air!

Lab results show that his coagulation factors are also increasing on their own without requiring any transfusions. Another good sign. But, he will likely continue to require blood transfusions because the chemo knocks those blood cell counts down; this is an expected response to chemo treatment.

We also inserted the feeding tube yesterday, so he is now being fed breastmilk directly into his stomach. We felt this was necessary to ensure he receives the nutrients he needs to help his body heal and recover. We are also continuing to bottle feed him on demand.

We have also been enjoying story time with Adam everyday. The hospital gives him one free book a day to keep ♥️. Adam loves when we read to him.

So, many people are probably wondering what a day to day looks like for us here at CHLA. We’ve been here for 5 days now, and I feel like we’ve practically moved in. I’ve already unpacked my suitcase and put stuff into drawers. Here’s a view of our room at night. That’s the fold out bed in the back.

There is only 1 bed in the room, so every night one of us goes home (Pasadena) to sleep, then back to the hospital in the morning. Lately it’s been me staying at the hospital. (I don’t think I would sleep well at home without my baby there anyways). The hospital provides bedsheets, pillows, blankets, towels, etc. so there isn’t much we need to bring from home. The bed is surprisingly comfortable. We have a full bathroom with shower too. The one thing the hospital doesn’t provide is a fridge! Unless you’re kosher (we considered going kosher for a few weeks so we could get a fridge… ?)

Shift change happens at 7:00 am and 7:00 pm, so that’s when things are the busiest. Nurses or care partners come in every 4 hours to take his vitals. (Yep, in the middle of the night too) and Adam pretty much sleeps through all of that ?, as do I.

Everyone has been asking me whether I get enough sleep, and the honest answer is, for most nights I haven’t had to wake up in the middle of the night because the nurses here are AMAZING – they take his vitals as quietly as possible, change his diaper every 2 hours so I don’t have to wake up, and Adam doesn’t typically feed at night. So the short answer is, yes, I think I’m getting a decent amount of sleep ?

6:00 am Adam is weighed and his girth is measured to see if his abdomen is getting smaller.

7:00 am-8:00 am  Wake up and eat breakfast (yes, pizza counts as bfast!)

 

10:00 am-11:00 am Doctors round and stop by to discuss the plan for the day with us regarding Adam’s treatment and care

12:00 pm-1:00 pm Lunch, unless Adam has any other procedure scheduled. His vitals are always taken at this time too.

(This is not a food blog, I promise…)

5:00 pm We give Adam a bath, change his bedsheets, and put a new gown on him. Because of his central line, it’s important that we bathe him every night (sponge bath, no submerging in water), to prevent any possible infections. Here’s our clean little boy right after his bath. He still loves those IV wires.

6:00 pm Blood draws are done every 12 hours to see if he needs any transfusions for the night.

Throughout the day we have docs and nurses coming in and out of the room all day, giving us updates on Adam’s condition, his lab results, possible meds or infusions we may need to give him. LOTS of decisions that we have to make on a day to day and sometimes hourly basis. We pay close attention to Adam’s mood, which is always an indicator of how he’s doing and feeling, to see whether he needs any pain meds. Making sure Adam is comfortable is of utmost importance right now. We change his diapers at least every 2 hours because the chemo medication can burn his bum bum and diaper rashes can happen easily. We also change his diapers with gloves on. We feed him almost every hour. Since he can’t eat much at a time because his stomach is squished, we feed him less quantity but more frequently. Adam drinks breastmilk by bottle, but as of yesterday he has not been eating well so we may need to insert a feeding tube tomorrow ?

For the most part, Adam sleeps a LOT these days because he’s on a lot of meds. When he’s sleeping, Mark and I take turns going out for a short walk. I do my Starbucks coffee run any chance I get (decaf americano with cream and sugar ?). But when Adam’s awake, we enjoy some play time with him which includes singing to him, reading to him, holding him, talking to him, playing with toys, and making silly faces to get him to laugh and smile (Dad is better at this than Mom).

A lot of people have asked how they can practically help and whether they can bring us food. Yes! A dear friend of ours has set up a meal sign-up for people to help bring us food everyday. Meals are either home cooked or ordered from a local restaurant and delivered to the hospital. This has been unbelievably helpful to us. We may be posting up the meal sign-up to this blog soon for others who would like to sign up, once we’ve figured out the extent of Adam’s hospitalization.

For those who don’t know and are wondering about my work situation, I work for the County of Los Angeles Public Works Department as a project manager/civil engineer. I am currently on FMLA leave from work and my bosses and coworkers have been beyond understanding and are so supportive of my situation. I am eternally grateful for that.

Please please do continue to pray for us. Even though we cannot respond to each of you individually, know that your prayers and thoughts have been such a supply to us. And even though Adam has had some good moments, we expect there will also be bad days, where we will need more of the Lord’s abundant supply of grace.

Last night Adam had a fever. As a chemo patient, fevers are taken very seriously. A blood culture was taken to check for a blood infection, and so far it seems clear. He was given Tylenol to reduce the fever, and put on antibiotics as a preventative measure. This morning his temperature was back down within normal range. He didn’t eat much yesterday, and seemed to be in more discomfort. We are hoping that he will soon begin eating more by mouth to avoid tube or IV feeding.

He is currently having a scheduled bone scan done to give a clearer picture of the neuroblastoma in his bones. It will take about an hour. He’s being very calm all wrapped up in the machine.

So, yesterday afternoon Adam received his 3rd dose of chemo medication and he has now completed his first cycle of treatment. He had no reaction to the 3rd dose this time (thank you, Lord ?) and everything went smoothly. Thank you to all those who had been praying for this!

Last night after his treatment finished, Adam surprised us with a BIG BIG smile. ?? That made me SO happy, I cried.  I had not seen my sweet boy smile in 2 weeks. Luckily, I was able to capture a photo of it.

Dad enjoyed some time with Adam yesterday as well. Adam kept trying to grab his beard, pretty vigorously too. All the nurses keep saying how strong he is, so I believe he’s going to fight this cancer!

Adam’s next chemo treatment (cycle 2) will be in 3 weeks. So for now, we just wait and see how he does over the next few days. He will be under close examination by the doctors and nurses. His immune system is expected to decline in the next few days as the cells in his body are being killed off. That includes the bad and good cells, unfortunately.

He continues to get blood transfusions almost daily. Because the cancer is in his bone marrow, his body’s ability to produce red blood cells has been compromised. He’s also receiving other infusions which help with his blood’s coagulation factors. I’ve learned so much about all this. I feel like I’m relearning Biology again.

Side note: Thank you to those of you who have donated blood and platelets. Never in a million years did I think that my son would be the recipient of a blood donation. So THANK YOU to all of you who do this! Please know that you are literally saving lives by doing this. It is not a small thing, and our family is grateful to all the donors out there. ?

More updates later today… stay tuned.

Despite the distressing news we received yesterday, we are happy that Adam seems to be more alert and playful this morning. He was talking to the nurses, rattling his toy, and as always, pulling his IV wires. He is also eating much better than the last few days, AND peeing and pooping a lot!

“Yay, he pooped!” – music to every momma’s ear ☺

Mommy and Adam enjoyed some sweet time together this morning:

 

Adam is getting his 3rd dose of chemo treatment this afternoon. Please pray that there are no complications/reactions and that everything goes smoothly.

The doctors have asked us to consider putting in a feeding tube to ensure he gets enough nutrients, but we really don’t want to because it will be very uncomfortable for him. Please pray that Adam continues to bottle feed well (I.e. no vomiting) , so that we can avoid using the feeding tube.

Adam has his second chemo dose today. He once again had a similar reaction as last night where he deoxygenated and hyperventilated. However after some additional pre-medications, the transfusion was resumed and 4 hours later the second dose of chemotherapy was complete. Adam’s 3rd and final dose will be tomorrow (Saturday) afternoon.

We also received some very difficult and devastating news this afternoon. An ophthalmologist came to take a look at Adam’s left eye, which had developed a bruise 2 weeks ago, caused by pressure from the cancer in the bones behind his eye. The left eye is currently not functioning as it should and though the eye seems “healthy” at the surface, the optical nerve appears to be damaged somewhere further back. The doctor thinks the damage may be permanent and it’s likely he may never recover sight to this eye.

Why God, why? Is the cancer not enough that he should be blind too? We cannot understand. This is too much. Disappointing news after disappointing news. Oh Lord, we have no words. Our faith is weak. But Lord, you are able to do superabundantly above all that we ask or think. Restore Adam’s sight. Do it, Lord! Mark and I are struggling so much with this news… please pray for us.

Prayer requests:

• The function to Adam’s left eye would be restored and that whatever damage there is would not be permanent.
• Mark and Hannah would be supplied by the Lord’s grace in this difficult time.
• Mark and Hannah would continue to trust in the Lord despite what difficulties may come.

(more…)

Adam tolerated both chemo treatments last night, and slept fairly well. He is resting today, and will have another round of chemo tonight. He continues to need blood transfusions because his liver function is limited, but he is on less IV fluids, and eating a little more.  “Child life” came by and set up a mobile for him and gave him a rattle that he played with for a while.

The chest X-ray was clear and showed no fluid in his lungs. As a result of this side effect from the 2nd chemo medication resulting in deoxygenation, the doctors decided to give him hydrocortisone (steroid) to combat the reaction. The steroid worked well and the second dose was given once again at a slower rate to ensure there is no reaction. He did not hyperventilate this time and his body reacted just as the doctors had expected.

This 2nd chemo medication will continue to run its course for 3 hours, and Adam is now sound asleep. Once completely infused, Adam will have received his first chemotherapy dose. Please pray that there would be no further complications.

Adam responded well to the first type of drug that was used, but began deoxygenating and hyperventilating with the administration of the 2nd type of chemo drug. It has been stopped for now, and a chest X-ray ordered to make sure his lungs are clear. We are awaiting the decision of how to proceed.

We had long discussions with the Neuroblastoma specialist today. Adam will be receiving his first dose of chemo today due to the rapid rate at which his tumor is developing.

Prayer burdens:

• The tumor would respond to treatment and relieve his breathing, digestion, and swelling.
• It has not been determined if he has elevated NMYC gene which would drastically affect the amount of treatment needed.
• His vision could be damaged in the long term if there is too much pressure on his optic nerve for an extended time. Please pray that the pressure would subside and his vision would return to normal.