Month: February 2018

Good morning. Yesterday and today have been so hectic, thus the late post. But, we have some new updates for you.

As you all know, Adam had his biopsy procedure yesterday morning at 9:30 am. The procedure was done within an hour and Adam did great. There were no complications, and the surgeon (along with the pathologist) believe they obtained a viable tissue sample which they would be able to analyze for determining its DNA. Some of the tumor was necrotic (dead) so it was important for them to obtain a sample of the live part of the tumor. We will not know the biopsy results until next Monday. (So far away, I knowwww…)

After returning from the recovery room around 12:30 pm yesterday, we were informed by the doctor that we were to be discharged that afternoon. In that moment, so many thoughts ran through my head- were we ready? Was it too soon? What if something goes wrong? How will we know what to do? I hadn’t mentally prepared myself for this moment because I didn’t think it would be coming so soon. It came as such a shock to me. After living in a hospital for just about this entire month, the thought of going home seemed terrifying and so foreign. But the doctors felt that since Adam’s biopsy procedure went well, and since he had been improving so well this week, it was time to send us home, so we could return to a life of normalcy. But, knowing that our new “normal” would never be the same as before was so scary to me. Despite our fears of leaving the hospital where we had the comfort of nurses and doctors right outside our door, we were discharged at 9:30 pm last night. I hesitantly asked the doctor if we could stay one more night, and her response was, “No, Adam needs to go home. You will be fine, you’re great parents”.  I just about cried after hearing this. As reality finally set in that we were actually going home, I realized that now is when the hard part begins…

I think Adam was ready to go home, (as you can see from his smiley face ☺) but mom not so much. We didn’t realize how much stuff we had accumulated in our hospital room over the last few weeks, so it took us about 5 trips to and from the car. Good thing my parents were at the hospital to help us out. We had to pick up all his meds from the pharmacy, wait for all our supplies for Adam’s central line to arrive to our room before we could leave. We drove home last night (in the rain!!) with a full car load of stuff, but alas we made it home around 10:30 pm last night.

Adam’s NG tube was removed right before our departure. (Hooray!) His eating had improved the last few days (eating about 20 oz per day) and so the doctors were comfortable with us going home without it. We are SO glad we didn’t have to bring him home with the NG! The downside to this is that all the meds he’d been receiving through his NG will now have to be given orally. We have not had success administering oral meds to him in the past, so this morning brought many new challenges to us. It took us a long time just to give him 2 meds. And more meds later this evening. Hopefully this gets easier. We pray that the Lord would lead us and guide us in how to care for our sweet little Adam as we learn to live with all the challenges that come with caring for him at home every day.

We all had a restful sleep last night. Adam, Mom, and Dad all got to sleep in their own bed last night. And Adam slept through the night without needing any feeds! (Good news for Mom!) He slept in the car ride all the way home, and stayed asleep as we transferred him to the crib. I think he slept over 12 hours last night for the first time in a month! Thank you Lord ?

Please pray that the Lord would continue to supply us superabundantly especially now that we are at home. Our current prayer burdens are still the same as previously posted. We are anxiously awaiting the results of the biopsy next Monday.  (more…)

Please also pray that Adam’s blood pressure goes down and stays normal. His BP has been very high for the last few days, and though he is on continuous medication for his blood pressure, it still spikes occasionally. The doctors are still trying to understand what is causing his elevated BPs, but it’s likely just a side effect of his neuroblastoma.

Since Adam has been doing so well and he’s been such a trooper, and stuck in a hospital bed for most of the day, I decided he deserved some screen time (just 5 minutes though) ☺

Adam also enjoyed some new toys he got this wknd!

We’ve been enjoying this hymn this week:

My heart is hungry, my spirit doth thirst;
I come to Thee, Lord, to seek Thy supply;
All that I need is none other but Thee,
Thou canst my hunger and thirst satisfy.

CHORUS
Feed me, Lord Jesus, give me to drink,
Fill all my hunger, quench all my thirst;
Flood me with joy, be the strength of my life,
Fill all my hunger, quench all my thirst.

We pray that the Lord would continue to supply us through this situation, flooding us with joy and being our strength.

Thank you all for your continued prayers, especially for tomorrow’s biopsy and the specific prayer burdens in Mark’s earlier post today.

This past week has involved a lot of R&R for Adam, but also he has had to redo some of the diagnostic tests that were done the first week of his hospital stay at another hospital. Unfortunately, the tumor sample, and the imaging scans were not adequate, so he had a repeat MIBG scan (full body, to determine location of neuroblastoma cells), and his primary tumor biopsy is scheduled for tomorrow, Monday, at 9:30 AM. The biopsy can be performed by a surgeon, involving either laproscopic (camera) surgery, or if the liver was being biopsied, the surgeon could perform it by eyesight. Our doctor’s preference (and ours) was to use interventional radiology to perform the biopsy instead. This involves using imaging guidance to insert a hollow needle into the primary tumor, and then using this “tunnel” to go in and grab samples of the tumor. This is the less invasive option, with lower bleeding risk, however, there is a small possibility that the tissue could be necrotic (dead) and not provide an adequate sample. This possibility was weighed against the invasiveness of a surgical biopsy, and we’ve decided to go the interventional radiology route. We have already consulted with the doctor who will be performing the procedure, so assuming Adam is healthy, it should all be done by noon time tomorrow.

Regarding Adam’s health, he appears to be improving daily. He seems to be pain free, his appetite is coming back, his immunity is coming back up, and he’s noticeably more active and talkative. The one area that still needs improvement is his platelet count, which is still low, meaning his body is not producing them on its own. In itself, this is not a factor that would require us to stay in the hospital, so the doctors are optimistic that we may be able to go home on Tuesday.

We are somewhat excited to be able to go home after nearly a month of hospital living, however, there are a lot of factors related to Adam’s care that are currently taken care of by the nurses and care providers, which will become our responsibility when we leave. Medication in particular is a big one.  His NG tube has been very helpful in administering medication directly to his stomach without him having to open his mouth or taste it. The plan is to remove the NG tube prior to discharge, which means we will have to give all his medications by mouth. He is not the most cooperative kid when it comes to oral medications, so we shall see how successful we are. On the positive side, he won’t have an NG tube stuck down his throat and plastered to his face!

Even tho we may be discharged, we will most likely be back at CHLA within a few days, as his next round of chemo is due this Thursday, we don’t yet know if we’ll stay with that plan or delay a bit to give Adam (and us) a chance to recover more.

Prayer Requests:

• That the biopsy would be without incident, and the sample would be viable
• Adam’s health would continue to improve
• The discharge and re admission would be smooth
• Mom and Dad would know how to take care of Adam at home
• Not mentioned in post- health insurance is a necessary hassle to deal with. And will have many ongoing issues to sort through

 

Here’s our boy back to tummy sleeping

Play time with Grandma and Grandpa

Here’s an adorable little video of dad and Adam having a nice chat together ? (They have a special bond).

Also, for those who tried subscribing to our website a couple weeks ago, we understand there were some technical difficulties but they have since been fixed. The subscribe function should now be working. Please let us know if you are still experiencing any issues with that.

So, as of yesterday, there have been several new developments that we want to update everyone on. Adam has been showing a lot of improvement, little by little and day by day. There’s a lot of information to share including current prayer requests, and we will be providing you all with that update tomorrow, pending some information we expect to receive from the doctors by tomorrow morning. So, for now, I’ll just go ahead and provide you with a few photos that should hold you over until tomorrow… ♥️

As you can see from the photos, Adam’s left eye has improved a lot. It is pretty much open all the way now and the bruising has gone way down.

Many people have asked us how they can help us out, and right now the most practical thing that we need help with is food. A good friend of ours set up a meal sign-up for those who would like to help out in this way. Here’s the link:

https://m.signupgenius.com/#!/showSignUp/20F0F48AEAA2FA64-supply

Most of the slots through the end of this month are already filled up, but we recently opened up a few more dates into March.

Just a heads up – we’re not entirely sure when we’ll be discharged from the hospital; therefore the drop off location may change from CHLA to our home in Pasadena. We will let you know. What used to be such a mindless thing has now become an afterthought since our time is now consumed with caring for Adam and learning how to live with all the challenges of our new life.

Thank you SO MUCH to those who have already brought us food and to those who are willing to sign up to bring us food. This experience has caused us to learn how to ask for help and how to rely on others. We realize that in order to take care of Adam, we need to also care for our own health and well being. Though it may seem like a small thing, please know that this is a HUGE help to us.

We are so thankful to each and every one of you who has continued to pray for us and is also helping us with practical needs such as this. ?

I apologize if the following explanation is too technical, but it will help in understanding the glimmer of hope we received yesterday evening.

Background:

From the time Adam was diagnosed with neuroblastoma, the question of whether or not he was stage 4 (high risk) or 4s (intermediate risk) was an immediate question. For stage 4, the survival rate is based on a variety of factors, but roughly 50-60% and treatment is typically 18 months long. For 4s, the prognosis is much better, treatment is shorter, and the likelihood of the cancer recurring is lower. The only way to definitively identify which of these a tumor is, is to get a sample of the tumor and analyze it for a particular gene called the NMYC gene. If the sample is “NMYC amplified”, it is categorized as stage 4. It means that this particular gene is greatly multiplied, and thus the neuroblastoma is more aggressive requiring stronger treatments over a long period of time.

Since the first few days in the hospital, we have been under the impression that Adam is stage 4. The doctors looked at the prevalence of the neuroblastoma in his abdomen/liver, bone marrow, behind his eyes, and almost every bone in his body, and combined with the rapid deterioration since the onset of symptoms, told us that the chance of this being stage 4s was unlikely. Over the past 2 weeks since we’ve been transferred to CHLA, we’ve been waiting for the doctors to get samples of Adam’s bone marrow, and analyze it for the NMYC gene. The samples we had originally brought from CHOC were not adequate, and the process of getting other samples and analyzing them took some time. Yesterday evening we were told that the CHLA doctors did review the samples, and there is not an adequate amount of tumor for them to determine whether or not it is NMYC amplified, thus they will be proceeding with the biopsy next Monday. They did, however, mention that there was an indication that there’s a possibility it is not NMYC amplified. The details of this are even more technical, where the proteins, rather than the DNA was analyzed, but our doctor said that this, combined with how well Adam has responded to his first chemo treatment indicate that there is a chance he is not NMYC amplified. Although we will not know until after the biopsy has been done, this was our first time hearing this kind of positive possibility. We are definitely encouraged to hear this and are cautiously optimistic, but at the same time need to be prepared for either option. The next week will be one of anxious waiting, hoping, and praying.

Current Condition:

Adam’s condition has been improving day by day. He has been taken off of most of his IV medications, and has been switched to oral meds, which are administered through his NG tube. He is being fed through the tube at night, and bottle fed during the day. His appetite has been limited, but today he showed more interest in eating. His abdomen has been shrinking, and his eye has been opening more, with his pupil possibly responding to light. His eye is still not tracking, and seems unresponsive to movement in front of it. He is off pain medication, but his blood pressure has been elevated as of 2 days ago, and he has had more trouble sleeping the last couple nights. His attentive doctors and nurses are closely monitoring him and adjusting treatment daily. We will be staying at the hospital till after the biopsy, and may possibly stay till after his 2nd round of chemo.

Prayer Requests:

1) That Adam’s cancer would not be Stage 4 (high risk)

2) That his eye would continue to improve and he regain function

3) That his blood pressure would go down and that he would not require continuous medication to treat this

4) That he would be comfortable, get the sleep he needs, and begin eating more

5) That Hannah and I would not be anxious and be able to handle the waiting, the classes we need to take for home care, and all the ups and downs of each day

Here are some pictures of our happy boy:

 

 

Okay, hi, I’m back! (not that you guys were waiting around for me…) I needed to take a quick breather. First off, here’s a couple pics of our brave little boy this morning! He’s slowly starting to sit up again.

The weekends at the hospitals are the best because docs and nurses are not constantly coming into your room. (Even though it’s totally necessary). And the 3 of us get to spend more quality time together as a family. But somehow Adam’s naps always get interrupted, and for those of you who have kids, I’m sure you know what happens when you wake a sleeping baby. Yeah..  EXACTLY.

Regarding Adam’s eating…

Starting yesterday, we have been turning off the feeding pump during the day to stimulate his hunger and force him to eat by mouth. He hasn’t been eating a lot but today was a little better than yesterday. At night, the feeding pump is turned back on and he receives a small continuous feed throughout the night.

Adam has also been vomiting every night at midnight for the last 2 nights.? It’s the saddest thing to see an infant throwing up. And one of the times there was a little blood in his vomit. (Sorry if this is too much information.) So, the doctors gave him a medication to protect his stomach lining. We’ve also increased the frequency of his anti-nausea medication to help with the vomiting. Thankfully last night, he did NOT vomit! ? Thank you, Lord. Please pray that Adam continues to eat well and does not vomit anymore.

Regarding Adam’s pain medication…

For the last 5 days, the doctors have been slowly weaning him off of his continuous pain medication. As of today, his pain medication was discontinued! This was a HUGE deal, since he’s been on pain meds continuously for over the last 2 weeks. AND we are now one tiny step closer to going home. Adam did great the last few days as we were weaning and today so far he’s doing amazing. Since he’s doing so well without the pain meds, the doctors also decided to “graduate” him from needing to be on a monitor 24/7, so he now has 4 less wires hooked up to him! Today was a BIG day.  We’re excited about being able to roam the halls now.

A physical therapist came by to see Adam today, to help him strengthen and regain some muscle function that he’s lost since his diagnosis. He used to love jumping up and down, and he’s now slowly learning to stand up and hold his legs up again!

Regarding Adam’s eye…

Most of the swelling in his left eye seems to have gone down a lot, and he is able to open up his eye more now. The purple bruising seems to be going down too. This is a good sign that the tumor in the sphenoid bone behind his eyes may be shrinking. His left eye is still not tracking, but we hope to meet with the ophthalmologist sometime again this week for more information. We still don’t know the condition of his optic nerve and whether any permanent damage has been done, so there is still a lot of worry and concern about this. Please continue to pray for Adam’s eye and for this visit.

Lastly, Adam will probably need to have a biopsy of his primary tumor done, this week. We are hoping to speak to his primary care doctor tomorrow to discuss this. She wants to make sure all his cell counts are up and doing well before he undergoes anesthesia for this procedure. Please pray for this biopsy procedure to go smoothly and that the doctors would obtain the information they need in order to finalize their prognosis.

Thank you again for your continued prayers, and for allowing us to share our specific prayer burdens with you.

Adam is starting to use his feet a lot more again. Lately he enjoys wrapping his feet around dad’s face or pressing his toes against dad’s face ?

 

We’ve started sitting him up more, which he seems to really enjoy. We think he’s getting tired of lying in a bed all day (who wouldn’t!) He still can’t sit up on his own yet but that’s probably because his belly is still pretty big. A physical therapist and occupational therapist came by to see him this week and gave us some tips on how to keep him moving and make sure he’s growing and developing normally. We hope to get him out of the crib and start playing with him on a play mat soon!

Adam also enjoyed his first Chinese New Year and received his first hong bao (red envelope) today! Thank you gong gong and po po. Grandma and grandpa got to spend some quality time with Adam today, and Adam wishes everyone a Happy Chinese New Year!

And Mom and Dad enjoyed a delicious Chinese New Year lunch today, from guess where? ??

Speaking of eating, today Adam vomited AGAIN ? So, we reduced his feeds down to a minimum and he is also receiving anti-nausea medication. Nausea is a common side effect of chemo so we think that’s what may be causing his vomiting. We are still bottle feeding him on demand, in addition to the tube feeding, which we are hoping he’ll do more of so that we can eventually remove the NG tube.

Sorry, I know we’ve been talking about vomiting A LOT. But hopefully that’ll stop soon and then I won’t have to talk about it anymore 🙂

The doctors are also wanting to slowly wean him off of his pain medication. We’ve been reducing the dosage a teeny tiny bit every day and he’s been doing great so far. He has been getting a continuous dose of pain meds thru his IV line, but he needs to be completely weaned off of this before we can go home.

Hopefully going home is in the near future for us, but as of right now still no sign of discharge from the docs. More updates later.

Adam is still recovering from his first chemo treatment but we are seeing small improvements day by day.

I woke up to this BIG SMILE this morning ?

His belly got another 2 cm smaller in circumference from yesterday’s measurement. His weight also went down by 0.7 kg. It seems his left eye is also a little more open today than it was yesterday!

  

The doctors have now prioritized his eating and nutrition, so it’s extremely important that he eats well and reaches his “feeding goal” based on what the nutritionist has recommended.

Adam is still eating through the feeding (NG) tube. However, yesterday he vomited twice because we think the feedings are still too large for his stomach capacity (36 ounces/day). ? So this morning we reduced his tube feeding volume to something much less (24 ounces/day). But then tonight, again he vomited ?. So right now we are still trying to figure out what volume his stomach can tolerate. The nutritionist seems very aggressive in how much she wants Adam to eat. But we’ve asked for a less aggressive goal (so as not to be counterproductive). Please pray that Adam’s eating will improve, so that he gets the nutrition he needs.

Lastly, we found out tonight that Adam may need to undergo a small surgical procedure next week in order to do a biopsy of his tumor so they can determine how aggressive the tumor is. The biopsy will tell the doctors whether his neuroblastoma is N-MYC amplified or not, which will ultimately determine the final prognosis and thus the treatment plan. If N-MYC amplified, this means he is high risk and a more aggressive treatment is required and also lengthier treatment duration. More details hopefully next week.

Please continue to pray for us and please know that even though we may not be responding to your individual comments, we are so thankful to those of you who are following this blog and fervently praying for us EVERY SINGLE DAY. We love you all.