Life As We Know It

Sorry, this update is long overdue.

The last we posted, Eli was admitted into the hospital due to a fever which turned out to be typhlitis.  This required ‘gut rest’ and white blood counts to return.  Gut rest required us to stop oral feeding for a week and give him IV nutrition.  To cut to the chase, Eli was able to leave the hospital on August 23rd, after 10 days in the hospital.

This was the first delay in treatment as we we push forward towards Stem Cell Transplant, SCT.

Between August 23rd and now, Eli had a couple follow up items to see how he has responded to the first phase of treatment.  Additionally, there was some pre-work items to see if he was ready for SCT.

We gauge how much cancer remains in Eli by the Bone Marrow Biopsy and MIBG scan.  The news according to Dr. Browning is: “Good but not great.”

Based on the bone marrow biopsy, the measurement of cancer in his bone marrow went from 100% in April, to 60% in May, to <1% in August.  Was hoping for 0%, but still good news.

According to the MIBG scan:
“Significantly improved uptake throughout the osseous structures, with mild residual uptake seen vertex and right proximal tibia.”
Translation: The MIBG scan shows that cancer is still at the top of his skull and the top of his right knee.  We were hoping for no disease, but this is still good news.

The biopsy and MIBG mean that Eli qualifies for continuing on with treatment.  Sadly, there are cases where this is not true.  There are cases where the cancer does not respond to chemo and even progresses.  So we are thankful for being blessed with decreased cancer cells.

Now, on to SCT, which requires numerous tests to verify Eli is well enough for treatment.  This included: NM Renal Scan GFR, Echocardiogram, ECG, Head CT, Chest CT, blood work, urine test, and psych exam.  The final results are that Eli was well enough to start SCT on September 12th.

This is where the second delay occurs.  On Saturday, Sept. 10th, Eli started to have flu like symptoms of fever and running nose.  Tests showed that he had Rhinovirus which has been a prevalent virus as of late.  So the decision was to delay treatment until Eli got better.  He’s now scheduled to have a follow up on Monday, Sept. 19th, to determine if he is ready for SCT.

Besides all the events pertaining to treatment, Eli had some really great experiences.  On August 31st, Eli got to tour the Village of Pewaukee Police Department and also meet members of the Waukesha County Sheriff’s Department.  On September 8th/9th, Eli went to 4K at Pewaukee Lake Elementary. We have pictures and links at Eli’s Super Squad Facebook page.

Speaking of Facebook, with our busy life of having 5 kids, one being a baby, sporting activities for the big kids, and Eli’s situation, we tend to post a lot more quick updates on the Facebook page (search Eli’s Super Squad).  So if you’re using this blog as your main place of updates, we probably will have limited updates here.

Not the news we were hoping for.  But also not a surprise.  Eli has typhlitis.  There is inflammation in his bowel.  This will be treated with antibiotics, fluids, IV nutrition to allow “gut rest” to continue, pain medication to keep him comfortable, and close monitoring of his blood pressure (to make sure it doesn’t get too low) and heart rate (to make sure it doesn’t get too high)  They will draw more frequent labs to monitor certain things through his blood.  We have been told to prepare for about 10-14 days of an inpatient stay while he heals.  As I write this I received an update from the resident that Eli tested positive for C-Diff.  Now we have a culprit for the bacteria in his bowel.  Right now Eli is unable to fight this off on his because he doesn’t have any white cells post-chemo. Treatment remains the same as listed above, with the addition of another antibiotic to bring his total up to four. He will also be receiving platelets again overnight.

The good news at this point:
1. The scans do not show any sign of perforation.  Perforation would be a tiny tear in the bowel which would allow air.  That would require emergency surgery.
2. All his vital signs and lab work indicate that he is stable enough that he does not require a transfer to the icu.

I am trying to focus on the positives and be brave and be strong.  But quite honestly, I am upset and scared and nervous.  Things can make a turn for the worse at any given point.  We choose to believe this will be a really hard couple weeks but someday this will be a foggy memory in the rearview mirror.  It’s just especially hard now because we have hit a point in treatment where our entire family is just tired.  Tired of unpredictability.  Tired of last minute shuffling.  Tired of being separated.  Tired of watching Eli suffer.  Tired of sacrificing what we really want to be doing for what we have to do.  The last few days have been exhausting.  I was really hoping for Eli to bounce back after this last chemo so we could enjoy the remaining days of August together (in between a million appointments and scans that he already has scheduled for the next phase.)  I was hoping to spend some quality time with the big kids before they returned to school.  I was hoping to be able to do something for myself for once.  The baby?  Did I mention him?  Sadly, sometimes I forget the we have a baby. I want to spend time with him too!  So this is a big bummer for all of us.  But it’s the biggest bummer for Eli because he’s the one who physically feels the worst.

I did leave our room for a bit while Chris was here.  My favorite nurse saw me out there and came over with a huge hug.  She sat with me for a while and we talked and cried together.  My heart was just so heavy.  I was feeling so sad and scared and angry.  And now, as I sit here typing, my mood is shifting to be lighter and I’m feeling more positive.  Maybe the good cry helped?  Or maybe it’s because Eli (although still very sick, feverish, and in pain) is in a better mood.  (And my emotional state is typically correlated to his mood and state of well-being.)   It’s obvious that his pain is being better managed. Eli is mostly sleeping, but randomly talks in his sleep or wakes up to say silly things.  He’s being cute and funny and talkative with the nurse and resident, making all three of us laugh.  That makes my heart happy in the midst of all this pain.

Thank you all for your continued prayers, love, and support.  We know that God will carry us through this.  But most of all, we just pray for Ei’s total and complete healing.

After spending Friday getting platelets, Saturday in the ER due to medication error and sticky lines, on Sunday very early in the morning, Eli was admitted for fever/low counts. Looks like he’ll be here for a bit as we figure out what is wrong and work on healing.

Eli is in a considerable amount of pain. No longer vomiting, but continues to have diahrrea and severe belly pain that comes and goes. His fever fluctuates between 100s-102s. He has been on “gut rest” since last night which means no eating or drinking to give his irritated intestines/gut a break. The thought is that food & drink irritate it. It’s possible he has mucositis in his stomach lining. (Similar to mouth sores that people often get after chemo but this would be in his stomach) But, another possibility is typhlitis (inflammation of the intestines) He will be having a CT scan in a little while to look for that.  He has various antibiotics going through his system right now preventatively. He will be put on TPN (IV nutrition) because we are unable to use his ng tube for nutrition and can no longer give food/drink orally. He will also be receiving a pca (continual pain medication along with a button he can push for a boost) to manage his pain and minimize the peaks.  He is getting blood for low hemoglobin.

Now and again he perks up and talks/plays. But today has been pretty much constant cartoons. He is comfortable in bed with his legs drawn up but screams and cries in pain when he has to get out of bed and stand before getting on the toilet. I have to lift him in and out of bed and on and off the toilet extremely slowly because fast movements cause him pain. His counts still remain very low which is part of the problem. He doesn’t have white cells to repair whatever is going on inside his body right now.

Praying for answers, pain relief, and counts to come back. Nervous mama over here.

48 hours after coming home from surgery, we are back here at CHW for Chemo round 5.

The good news: Eli’s surgery went really well so everyone (surgery & oncology) felt that he is strong enough to begin chemo today. Just one week after abdominal surgery. That’s pretty amazing!

The bad(?) news: the chemo drugs he’s getting this time are the same as that awful pukey round 3. So right now we are sitting at the clinic getting fluids. Our team is working on a better anti-nausea plan for him, since they know how the reacted last time.

Chemo lasts 4 days, we will be here 5 so they can keep an eye on his nausea. He will go home with fluids.

The kids are bummed. Last week was hard on our family. The multiple hospital stays are taking their toll on everyone.

Eli is playing on his iPad as I write this and he turned to me and said, “Mom, I’m sad.” I asked why and he said, “Because I have to stay here for chemo.”

I’m sad too. This morning he and I were out in the backyard playing baseball (seriously – just a week after surgery! That’s how awesome he is!) and now we are back here for our 8th hospital stay in just a couple months.  After this round of chemo, the “induction” phase of his treatment will be complete.

Here’s an update for those not on Facebook.

Surgery went well and was quick. The oncology team was surprised when they heard from Dr. Lal so soon after surgery. He thinks he removed close to 100% of the tumor. Yeah!! The tumor also separated easily from the other organs. Also, there was minimum bowel manipulation required so they did not insert an NG tube for stomach suction. They did re-insert a new feeding NG tube.   So he should be on liquids tomorrow. And his goal tomorrow is to sit in a chair and to move around a little bit. So hooray for the successful surgery. Thank you all for the many thoughts and prayers!

Eli is resting now. He’s on continuous and ‘on-demand’ pain medicine. He’s pushed the demand button a few times this afternoon due to the pain. So today’s focus is to monitor the pain and watch it  subside a little hopefully.

If you are on Facebook, we tend to send small updates on a more regular basis. You can reach Eli’s page at.

https://m.facebook.com/elis.super.squad/

That’s a shark head on his hand.

It’s almost surgery time.  Eli goes in early Tuesday morning to have the tumor removed from his right adrenal gland.  Eli has just one tumor and it is fairly small in size compared to what many other children with neuroblastoma have.  Our doctors are optimistic that this surgery will go well.  Even so…surgery is complicated and has its own set of risks.  Chris and I met with Eli’s surgeon, Dr. Lal, while Eli was in the hospital last week.  On our anniversary.  Awesome.

At that meeting we discussed with Dr. Lal the pros and cons of him performing this as a laparoscopic or an open surgery.  Eli’s tumor has a piece (which Dr. Lal is calling a tongue) that wraps under his vena cava (a large vein that carries blood back to the heart.)  The short version of a lengthy discussion went something like this: Dr. Lal was unsure about being able to successfully remove the “tongue” portion of the tumor laparoscopically due to the positioning and the risks associated with hitting the vena cava.  But with an open surgery, he felt that he should be able to have a better chance of removing the entire tumor, tongue and all, and should something go wrong they would be right at the source of the problem immediately and able to treat it.  Of course, an open surgery means a longer recovery, more pain, and a different set of risks than laparoscopic.  In the end, we felt that being able to resect the entire tumor was the way to go.  So, Eli will be opened up for this surgery.  By the way, let me just say that it is REALLY hard making decisions for someone else.  And REALLY hard to think of what our baby is about to go through.

So, on Tuesday, please put on your Super Squad shirts (or maybe just wear his favorite color – red) and pray for Eli and his surgical team.  Pray that Eli will be the brave little superhero he always is.  He gets very nervous on procedure/scan days (rightly so) and at this point we haven’t told him about the surgery.  We will do that the day prior.  Pray that God will guide Dr. Lal’s hands and also the rest of the surgical team so that the entire tumor will be removed without complication.  Pray that Eli’s pain will be managed and he will recover well.

We don’t exactly know what recovery means at this point.  That is one of the harder parts of this.  With an open surgery, we were told that Eli could be inpatient anywhere from 5-10 days.  Everything depends on how he responds and recovers.  I’ve made all the plans I need to make for the other four kids through Friday.  Once we have a better idea of how long we will be inpatient I’ll be reaching out for more help.  Can’t plan too far in advance anymore.  That’s just how we roll now.

In other news, Eli is sporting a new accessory.  Exactly one week ago, Chris and I made the decision to have the nurses place an ng tube.  This is a feeding tube that goes up through his nose, down the back of his throat, and into his stomach. It is small and he is still able to eat, drink, talk, laugh, play, and do everything as usual with it in. During the day, he eats and drinks normally.  At night, we run Pediasure through his tube.  We worked with the dietician to figure out how many calories he needs to supplement what he is already eating.  (And what he’s already eating is not much.)  We have a pump, IV pole, and portable backpack type bag from our home medical supplier.  Every night at 8:00, Eli gets hooked up.  He is so efficient at moving around wherever he wants to go and just brings his bag with the pump along with him.  It’s pretty remarkable how well he has adapted.

Today I can write about the ng tube without crying.  Last week, I was in tears and couldn’t talk about it.  Our medical team had brought up getting an ng tube a few times because Eli is so tiny and they wanted to find a way to help him put on some weight.  At our meeting with Dr. Lal, we found out that Eli will not be able to eat for about 3 days after his surgery.  (I’m foggy on the details as to why.  Too much to absorb, but when I get that figured out I can clarify.)  It was then that Chris brought up the idea of the ng tube before surgery to get him some extra calories.  We both know that Eli really has no weight to spare.  If he is unable to eat for 3 days and was already not eating well, he could be in trouble.  Last week when we were thinking about this, he had mouth sores that extended all the way into his belly from chemo.  He didn’t want to eat.  At all.

Logically, we both understood that making this hard decision would benefit Eli in the long run.  Emotionally, I went into this kicking and screaming.

I was fearful that this tube would change his positive attitude and worried about him becoming depressed.  He hates his dressing changes for his CVL line.  Hates them!  How would he handle having a tube put up his nose and down into his stomach.  Oh, and these need to be changed monthly?!?!  How would he even hold still for that?  How would he be at home?  Would it get in the way?  Would it remind him every minute of the day of cancer?  I felt like I failed him.  We already tried an appetite stimulant after his first round of chemo.  He hated taking it and was already taking so many meds (all liquid) and it was literally a 20-45 minute struggle to get him to finish his medications.  And then we would have to repeat that about 5 more times throughout the day with different meds.  It was exhausting.  So we stopped the appetite stimulant for a while, basically to lessen the amount of meds he was taking.

A couple weeks ago a wonderful nurse practitioner listened to our frustrations with med taking and suggested to us that we get his meds in a pill form and crush them.  This was AMAZING!  After some exhausting struggles to find the right avenue for him to take the crushed meds, we finally found a winner.  A spoonful of peanut butter!  With that success, we restarted the appetite stimulant.  But what I didn’t understand was that it usually takes about 2 weeks for the appetite stimulant to kick in.  I thought it was an immediate effect.  Looking back at the timeline, he really didn’t get a chance to eat enough to make a difference on his own.  When he was up to eating, we ran into roadblocks like chemo, or mouth sores, or a few days of NPO during stem cell collection.

Every time I thought of all these things, I just felt like I failed him.  If only I had continued to struggle through all the meds with him and make him take the appetite stimulant from the beginning.  If only we learned about crushing it sooner, we could have re-started the stimulant sooner and gave him a better chance of wanting to eat more.  I never wanted this ng tube for him and I was falling apart knowing it had come down to him getting one.

Let’s just say that when it came time to put the ng tube in, all my worst fears were confirmed.  I held him tight, restraining his arms as two nurses put the line in.  He was screaming, gagging, and crying.  I was fighting back the tears and wanted to run out of the room screaming myself.  It is SO hard to hold your baby and make him do hard things when you don’t want him to have to do any of it.  He was so upset.  He refused to talk for about a day and a half.  He would grunt and scream and growl, sometimes stomp his feet, while pointing angrily at things to communicate to us.  He started hitting me in the hospital.  He was very angry about the tube.  The staff said this is common, but hang on because kids tend to come around.  I was having a hard time believing it.

Here is Eli, finally asleep.  He was exhausted from the emotional trauma after his tube was inserted.

We came home on Monday afternoon last week and Eli continued to be quite angry.  The 3 big kids were away at Camp Kesem, and it turned out to be a good week for them to be gone so the rest of us could adjust to this new tube.  It was a hard week. It was emotionally exhausting with all of Eli’s yelling, anger, frustration, noncompliant behavior, and also the guilt I was feeling.  And truthfully, I was mad he had it too.

He started coming around mid-week.  He started talking again and eating/drinking without complaint.  One thing he still doesn’t like is the feeling he gets down the back of his throat when we have to flush his ng tube line with plain water twice a day.  But just yesterday, the little stinker told us that now he likes his ng tube.  Seriously?  After a week of hell?  The staff was right.  He came around.  And so did I.  We are watching the scale climb a little each day and I know in my heart that we did the right thing for him.  For that, I’m glad.  Sometimes it’s just really hard doing the logical thing.

In typical Eli fashion – he likes to have as much control as he can.  He prefers to flush his ng tube with water himself and likes to press the start button on the pump once it’s all ready to go.

Eli had been asking no less than 3 times a day for about the last week when we can go back to the dinosaur museum to see Sue (the T-Rex).  We decided to make an impromptu get-away on Friday afternoon, because we just have no idea when we’d be able to get him back there since big things with long hospital stays are coming up in the next few months.  He was so excited.  We had a great time.

Looking ahead through the fall:
Surgery July 26 (in-patient 5-10 days?)
Chemo 5 (likely the 1st or 2nd week of August.  There is a possibility that we go straight from surgical recovery floor back to the HOT unit for chemo.  Hopefully, this is not the case and we get a few days at home.)
2 rounds of High Dose Chemo/Stem Cell Transplant (no dates set yet, but likely a month or so after chemo 5.  High dose chemo will wipe out his immune system and he will receive his stem cells back.  In-patient stay about 3-6 weeks each time.)
Radiation
Immunotherapy 

Neuroblastoma is the longest and most intense treatment plan.  The kids are hit with so many different kinds of chemo (and hard ones) because it’s such a difficult cancer to treat.  It’s just such a challenging road for these little peanuts and families.

Thanks for all your continued love, prayers, and support.  We are so thankful to have all of your in our corner!  Much love!

We’re still here at Children’s Hospital of WI.  You’ll remember that we brought Eli to the ER on Wednesday night.  He had a low grade fever during the day which spiked to a high fever in the afternoon.  They eventually admitted Eli, and we got to ‘check-in’ to our familiar floor on the HOT unit.  HOT stands for Hematology, Oncology, and Transplant.  This is a dedicated floor at Children’s for kids with these diseases.

For the last three days and four nights, Eli has been treated for low blood counts (because of chemo) and possible infection (because of low blood counts).

There are three things that the doctors look at from the blood labs, which are white blood cells, hemoglobin (red blood cells), and platelets.  Chemo does some pretty good damage on these counts, to the point where white cells are almost non-existent in his blood.  Hence, this is why there is the extreme concern when there is a fever.

So how do we treat the low counts?  Eli has a Neulasta shot around 24 hours after he completes chemo.  This will set the white blood cell factory into overdrive once it starts building cells.  Although, it doesn’t help it recover any sooner after chemo.  We still have to wait for his bone marrow to recover to make the white cells.  For the red cells and platelets, Eli has received 3 bags of blood and 2 platelets over the last week.  Thank you so much to all those who donate!!!  If you have always thought about donating, know that this is truly life saving for Eli.  He has had so many blood and platelet transfusions so far.  Any one of those times could have turned much worse without the transfusions available.

To combat any possible infection, Eli has been on antibiotics since he arrived at the HOT unit.  The labs didn’t show any bacteria; however, the antibiotics were given as a precaution while he had no white cells to fight infections .  It was also possible that bacteria from his intestine has been entering his surrounding tissues.  You ask why?  Eli has mouth soars which are caused by the chemo.  This also indicates that he most likely has stomach and intestine sores which would also be caused by the chemo.  He has been grimacing when the doctors feel around his belly which is a good indication.  These sores will eventually heal when the white cell counts increase.

Today, Eli will still be hanging out at the hospital.  His white cell counts have increased from <100 to 400.  Yea!  However, normal levels are above 4,000.  As long has the counts show that they continue to increase, Eli would be allowed to go home.  He also has not had a high fever for a couple of days.  He’ll be here at least one more day, but I’m hoping that he’ll be going home tomorrow.

Chris

Playing Xbox with Kinect.

Visit from Alex.

Having fun racing Lego cars on the hospital bed.

Eli handled his 4th chemo round with minimal side effects. He surprised me by waking up our first day home with energy and excitement to play. We were able to take advantage of him feeling well by attending birthday celebrations for my niece Hadleigh on Saturday and then for my dad on Sunday.

Sunday evening, we sadly learned that our little 2 year old friend on this neuroblastoma journey breathed his last breath and was welcomed into Heaven. I am just absolutely heart broken for his family and the pain they experience each minute of the day. Noah was in the immunotherapy phase of treatment (which is the last phase) and only had 3 more treatments to go before this nightmare was all over for him. I spent some time with Noah’s mom last week while we were both inpatient. We went for a walk on Wed to get some air. At that time she was mainly concerned about managing Noah’s pain from the immunotherapy infusions. We went home on Thursday. The plan was for Noah to go home on Sat but instead everything took a devastating turn for the worse for them.  Instead, Noah went home to Jesus on Sunday. Life is fragile and can turn in an instant. We pray in thanksgiving that Noah is pain-free and in the most perfect place. We pray for Noah’s family in their grief and suffering. I just have no words.

I was still reading about and processin Noah’s death when Chris and the kids came flying into the house in a rush. Eli had grabbed one of those reflective sticks that we use to line our yard in winter for snowblowing. (Abby had been dribbling her soccer ball through them). Eli decided to help put them away and in the process, he must have grabbed the wrong part and ended up with fiberglass slivers all over his hand. We panicked and little because he was in a lot of pain but we also knew this meant he had a lot of microscopic cuts in his hand.  With counts being low, this is a concern for bacteria and dirt, which can lead to infection and serious things happen with infections. Chris spent the next 2 hours carefully picking out the slivers while I held Eli. We got most. Eli was a trooper. We finished at about midnight and then after that he wanted to go for a walk. Earlier in the day, he earned his first prize from completing his sticker chart (reward for cooperating with medicine taking) and chose a hard hat with a flashlight on it. (Similar to a miner’s hat) He was anxious to try it in the dark. So, off we went, he and I, at midnight for a walk. When we got home he was hungry. And since we need this peanut to gain weight, we couldn’t deny food. We finally made it to bed at about 1 am. Have I mentioned that Alex sleeps through the night?  I am shocked (the other four did not sleep through the night until they were at least one) and so very grateful that he is letting us get uninterrupted sleep. Because we are exhausted anyway.  Eli’s hand is still sore and we are keeping it covered during the day to minimize contact with germs.

As usual, Eli’s counts started dipping and he needed blood on Tuesday. Coincidently, Chris had signed up to participate in a blood drive at work. As God would have it, Chris was donating at the same time that Eli was receiving. So we facetimed to share the experience. That was another 6 hour day at the clinic/day hospital.

Wed was a low-key day for Eli. He had a slight fever all day, wasn’t hungry, and just sluggish. Late in the afternoon I took his temperature and it was 102.5. Anything over 101 requires us to call ahead and go in to the hospital. Luckily my mom was over because I literally dropped everything and left. Chris met us at Children’s. At the ER, they drew his blood to check for infection. One of his lines was sticky again so he needed TPA in his line to loosen it up. They also gave him fluid and he rested. We were there for 6 hours before finally gettin admitted up to the HOT unit.

We will be here for a couple days. Fever is down slightly (thanks to Tylenol). Eli received some platelets. He may get blood again today. Now we just wait it out until his counts come back.

15 years ago on this day Chris & I said “I do.” Never in our wildest dreams did we think we would be in a situation like this. Since it took so long to move here from the ER last night we both stayed overnight. What a weird experience to wake up in the hospital and say “happy anniversary”. We will spend our anniversary in a (previously scheduled) meeting with Eli’s surgeon later today. Surgery will be July 26 to remove the tumor from his right adrenal gland.

The three big kids leave for Camp Kesem on Sunday. This is an amazing, free camp for kids who have a parent who has/had cancer. This camp is made possible through donations and fundraising that the college counselors work hard at all year long. We go to the University of Wisconsin (Madison) chapter. They are very much looking forward to it. I am excited for them to have a fun-filled week in the midst of a disrupted, stressful, unpredictable summer.

I do admit, after the events of this week, I am feeling a little defeated, angry, and very, very tired.  I’m trying my best to hold it together, because negativity is not going to help Eli at all. I’m hoping the next few days are uneventful and pass quickly.  I pray that Eli will get somewhat of an appetite back (right now he won’t eat or drink anything).  I also pray that he will start feeling better and the joyful, fun-filled spark will retun to him. Eli is just sad right now.  He wants to go home.

Last week was rough.  We we were at the hospital almost every day preparing for Eli’s stem cell collection.  We were also still giving him his daily injection of neupogen to boost his white counts before collection.  (By we, I mean Chris.  Thank you, honey, for doing that awful job.)  Eli didn’t want to eat anything.  He was still coming off feeling pukey and yucky from chemo.  On the days he DID want to eat, I had to keep him NPO (no food/drink) for hours to prepare for sedation for his collection.  We thought collection would be Tuesday, but his counts weren’t ready for collection. That was frustrating.  But, there really is no good way to plan for this procedure.  Everyone’s body responds differently.  We just had to wait and try again on Thursday.

I had also been agonizing (since the prior week) over the fact that Eli was scheduled for a bone marrow biopsy before his stem cell collection.  It just wasn’t sitting right with me, and I found myself approaching every person possible on Eli’s medical team questioning this procedure.  We were told from his oncologist that his stem cells would be collected no matter what.  (Remember, he was supposed to be collected after cycle 2 but based on the biopsy, they decided to wait.)  In my mind and in my heart, I just didn’t see the need to put him under sedation, keeping him NPO another day (especially when he is underweight.  Why would it be a good idea to withhold food from him for 3 days in one week?) Why put him through a procedure that wasn’t technically required?  Would it have been nice to do the biopsy to know how his marrow is responding to chemo?  Absolutely.  If the results of this biopsy would alter his treatment plan, would we do the biopsy?  Yes.  But the strong feeling in my gut kept telling me that it just wasn’t necessary or worth it to put him through this procedure if it was just for a “nice to know” reason.  In the end, the team agreed that the results of the biopsy would not change his course of treatment, they understood my concerns, and agreed to skip the biopsy. HUGE sigh of relief for this mama!!!

The stem cell collection happened on Thursday of last week.  It was a long day.  Of course, he was NPO again and very, very hungry and crabby.  Crabby is actually an understatement.  We arrived for labs at 9:00 am and it was hours before we knew he was ready.  In that time, there was a lot of yelling, kicking, scratching, and crying.  We were taken over to the PICU for the procedure.  A very nice woman named Jean from the Blood Center of Wisconsin was waiting for us with her big machine.  The plan was to get Eli sedated through his CVL line so he wouldn’t have any “pokes” from an IV.  Our little fighter really threw the nurses because it literally took him about an hour and a half to fall asleep.  The sedation med called dex (dex-something-big-long-and-fancy that I can’t remember.  But they referred to it as dex) was cranked up to it’s max for his size.  They were pretty surprised.  But he finally got sleepy-ish.

Once he was sleeping, they tried switching the dex to an IV in his arm, because both of his CVL lines were required for the collection machine (blood out one line and back in the other.)  He woke up flailing and crying the moment he was poked.  The vein rolled or something happened.  I’m not quite sure, but it didn’t work.  It took forever (again) to get him relaxed and sleeping.  The did add in another med to help relax him a little more.

Writing this, it doesn’t really sound that traumatic.  But, being there for all of this was another story. At least, for me. We had already been at the hospital for 6 hours at this point.  He was hungry and thirsty.  I was hungry and thirsty, because I don’t eat or drink in front of him when he can’t.  Watching the IV fail brought back a flood of terrible memories for me of awful IV experiences I had during my emergency infection surgeries.  Nurses and even the anesthesia team tried over and over unsuccessfully to get IV lines in my arm.  And you know what?  It really hurts.  Big time.  I had a huge lump in my throat watching him go through this and thought I would lose it at any moment.  I know the nurses were doing their best and Eli was not being an easy patient.  But I could not, and would not, watch him get poked multiple times as they tried to get an IV to work.  This was NOT the way it was supposed to go down.  They had all assured me that he would not feel the IV because he would be sleeping.  Except, he wasn’t sleeping.  And he was definitely feeling it.  I asked for an anesthesia team because we needed to get it in for sure on the next try.  Several minutes later, there were two women in flight suits standing in the door from the transport team.  They put his IV in flawlessly.  He slept through it.  And I could finally breathe.  For the first time that day.

The collection only took 5 hours.  That was a total shocker.  We were prepped for a lot longer than that.  His lines worked wonderfully so it went very smoothly.  The hope was to collect 15 million stem cells.  We found out the next morning that 31 million stem cells were collected.  We definitely got enough!  No need to go back.  Again, a huge weight off my shoulders.  Unfortunately, some kids have to go back multiple times (I’ve heard of up to 6) to collect the necessary amount.  This doesn’t necessarily tell us that his marrow is clear.  But it does tell us that his cells are able to move easily through his marrow.  (Which, if you are reading between the lines, would indicate that his marrow is not full of tons of disease.  Which is a bit of good news to hold on to.)

I can’t believe Eli’s stem cell collection was one week ago.  Every time people ask how things went or check in, it reminds me to post an update.  But this week, we’ve been so busy being delightfully normal and having fun that I just haven’t gotten around to it.  Eli was supposed to be inpatient for chemo this week (Tues, Wed, Thur).  At his lab check on Monday, we learned that his platelet count was too low.  So they gave us the week off.  Initially, I was nervous and frustrated to get “off track.” But I was assured that this happens regularly.  It is his little body’s way of saying “I need a break.”  I quickly realized just what a blessing this little break is.  He came off of a very rough several weeks where he was sick and weak and tired and crabby.  This week, he is happy.  He is playing.  He is EATING!  Our little peanut needs to put on weight.  We are hoping that this week he is getting strength, putting on weight, and actually enjoying some food.  We went to the Milwaukee Public Museum last Friday to see the dinosaurs (among other things.) We spontaneously went to the Brewer game last night.  We are hoping to go to the zoo tomorrow.  It’s been fun being able to go places and do things he wants to do this week while he’s feeling good.  Chemo #4 should begin next week Tuesday – Thursday.  So right now, we are savoring all of his good days.

Here they are…31 million stem cells.  And below that, the collection machine.

Today is the day. This feels big and important.  And maybe a little scary. We’ve been watching Eli’s counts this week to determine the optimal time to collect his stem cells. He will need these for his next phase, which is called high dose/transplant. First we have to get through chemo 4 (next week), surgery (end of July), and chemo 5 (beginning-mid August). Then he will move on to high dose chemotherapy, which will completely wipe out his immune system. He will receive his own stem cells at that time so he can rebuild. It will be intense.

So, today is important. The Bone Marrow Transplant team (BMT) is hoping to collect 3 bags of stem cells total. 1 for the first round of high dose/transplant and 1 bag for his second round. The third bag will be the reserve we PRAY hard they we will never need, because that would be used for a relapse.

His counts were very good today and the team is hopeful the collection can be completed in one day. If not, we collect again tomorrow.

Eli & I have been hanging out in the Day Hospital since 9 am waiting on the lab results. We’ve played Wii and watched part of a movie. He’s not interested in toys today. He has now moved on to crying and screaming, kicking, scratching and yelling that he is hungry. He’s asking me “why can’t I eat?” over and over. And saying he just wants to go home. I want all those things too. He has not been able to eat/drink (this is what they call npo in the medical world) today because his collection will be done under sedation. It’s really hard to keep gently telling him he can’t eat today while providing distractions to get his mind off food. It’s getting very hard to put on the brave face and be strong for him when I’m just as mad as he is. But, we have to do this to get the best possible collection.

Collecting stem cells will take hours. 4 is rare and on the very short end. 6-9 is probably more average. It’s asking a lot of  a 4 year old to sit still and hold a certain position for that long. Plus, his central lines have been “sticky” which potentially  further complicates the collection. So, we all agreed that sedating him will give us the best shotof getting the best collection we can.

He will be connected to a big machine. Blood will be drawn out of one of his lines. The machine will filter out and collect his stem cells. The remaining blood will be filtered back into his body via his other central line. (This is one of the reasons he received a Hichman or CVL instead of a port.)

Today we ask for prayers. We pray that his collection will go smoothly and his body will provide all the stem cells required. We pray for the anesthesiologist, blood center staff who oversee this procedure, and medical team. We pray that Eli will be calm (his anxiety has been kicking in lately). And, as always, we pray that chemo is working and his treatment will heal Eli so that every cell in his body will be free from cancer.

And..please…it’s 12:10 pm. Let’s get this rolling so he doesn’t have to sit here being hungry any longer.