31 Million Stem Cells

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.

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20 Responses to 31 Million Stem Cells

  1. Anonymous says:

    Eli and your family are in my nightly prayers…you’re truly a Superman Eli!!!

  2. Auntie Patti says:

    So many prayers coming your way. ❤️❤️❤️

  3. Jill says:

    I love what Julia wrote…Someday the only tears and fighting Eli will show you will be over an order to clean his room or to come inside and get ready for bed. I pray those days come soon. Sending love and healing energy to Eli and all of you!

  4. Eric Czyzewski says:

    Many continued prayers. Glad there is some good that goes on with Eli and you guys while surrounded with all of this craziness.

  5. Mary McClellan says:

    What a brave soul! I am ashamed as I sit here feeling sorry for myself struggling to get over stomach flu! My prayers are for graceand strength for the entire family…may God bless you all with what you need <3

  6. My heart aches for the pain you all endure. Eli will always be my hero. Sending my guadian angel over for extra support. Xoxo

  7. Bishop Callahan says:

    I know that you are all so aware of the prayers that are being offered for Eli–all over the world–but I just like to remind you that we pray especially through the intercession of Fr. Joe Walijewski, a priest of the Diocese of La Crosse, whose Cause for beatification and canonization is currently in progress. Fr. Joe loved kids–he set up an orphanage in Lima, Peru with a donation he begged from St. Pope John Paul when he visited Peru in the ’80s. I have enlisted “prayer partners” from everywhere who are praying for Eli through the intercession of Fr. Joe. We keep faith and we believe in miracles. I sure know that you, as a family do. Keep the faith and THANK YOU for being such wonderful and good parents. My prayers are with you all daily. God be with you.

  8. Anonymous says:

    I continue to pray for Eli and your family. He is
    definitely a fighter.

  9. Anonymous says:

    We were in ER at children’s last Thursday, both Tika and Emmy were asking about Eli, and were thinking about him.

  10. Jenn Paulsen says:

    So great to hear collection was a success and that he’s having a great week now! I have been thinking of you all like crazy!! Saying prayers for complete restoration and sending hugs your way!!

  11. Anonymous says:

    So happy he had a good week. Continued prayers from all of us. Much love to you all.

  12. Dana Hansen says:

    Give him hugs and kisses from us. We miss you all. I am proud of you for standing up to the team. Good job and good call. Listen to your gut always. God bless you.

  13. Uncle Buckwheat says:

    Thanks for the update Winkie. I really appreciate your details and it helps me understand and know how to pray. I am so so proud of Eli! Eli, you da man! ?

    Gk ad that Eli and you guys are getting this break make the most of it. I love you guys!

  14. baldheadguy says:

    My daily prayers are focused at your family! I hope you are able to enjoy the long holiday weekend!

  15. Sarah Hoffman says:

    Glad you had such an awesome week! We think of you all often, and are sending love and prayers. Love you! ❤️

  16. Julia Westphal says:

    Ahhh the amazing angels in the blue flight suits…I remember when Gabby was a baby and labeled “Failure to Thrive” and was over 3 pounds below her birth weight at 2 months old…dehydrated and only 7 hours after we left and they took the IV out of her foot, they were struggling to get the IV back on her. Ben had been removed from the room because he was so emotional, and Gabby was so exhausted- a lone tear rolling down her face looking at me, and I said “enough. Don’t poke her anymore, she can’t.” At that point they called those two awesome ladies and within seconds it was inserted…in her head ? But it was in.

    I genuinely believe that we are blessed with one of the finest children’s hospitals, and our flight for life program is spectacular. God bless those healthcare professionals.

    I don’t tell you this in an attempt to compare your situation to mine. Our journeys are different. I simply tell you this to offer “hope” at a time where it can be difficult. As you know Gabby is a solid kid and a strong and healthy young lady. That is Eli’s future too. Sometimes when you are in the thick of the pain and needles and terrifying machines and medical professionals, it’s hard to see the light at the end of the tunnel.

    Someday the only tears and fighting Eli will show you will be over an order to clean his room or to come inside and get ready for bed. When these stressful moments arise and you are feeling overwhelmed and frightened, trust your gut, and visualize him riding a bike or swimming, graduating high school or college…His future is so bright, and with amazing parents and siblings and family and friends praying and cheering for him, he will surpass any of our expectations. And this fighter who has emerged is his warrior spirit…you will rely on that spunk to get him through this…and then believe it or not, someday it will make you crazy. I promise. Better days are coming…enjoy the peace and normalcy this week momma. ❤️

    I love you all.

  17. Jen pulvermacher says:

    Unbelievable. So happy to hear that you enjoyed this week of rest and fun. Thank GOD he is eating again! I feel so blessed to have been able to spend a small part of the week with you and the kids. Much love!!! Jen P

  18. Holly Hiller-Kuhnle says:

    Didn’t mean for comment above to be “Anonymous”?

  19. Penny says:

    So good to hear Eli had a nice week. Anxious to see you all Saturday.

  20. Anonymous says:

    Eli is so brave! So glad you could do normal things this week Jamie! It was great to see you & Eli at the baseball game at South Park! ?

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