Updates

Well last night Nicholas flirted with a fever in between 100.2 to 99.8 and so we were admitted.  His ANC was at 0 so even though we had no fever by the time we got to the hospital - they still did cultures and inpatient we went.

So today, day 2 at 0 ANC.  He also needed platelets and so he is getting transfused today.  Other than that, he is acting fine - playing and active.

 

Dear Lord,

My heart breaks over these children here at St. Jude - I ask that you provide MIRACLES father. Please be with baby Mason right now God. We also ask you Lord to bless our platelet donor today. God, so many prayers surrounding children here - Lord I beg you for your perfect hands to encompass these children Lord. Watch over so many children, Wade, Mason, Ryken, David, Christian, Ryan, Rachel, Yeshaai, Ali, Maggie, Seth, Megan, Bree, Eric, John, Katie and Isiah my list goes on and on.

Nicholas Loves this fountain at Target House and when I took the picture I can now see why - do you see God's covenant?  The rainbow that has followed us through this journey is in the fountain too! We have an off day and hopefully no fever and we can enjoy just a day without the hospital. We have labs tomorrow....

Baby Nicholas woke up around 12:30am last night and really slept terrible. He woke up with a hoarse cough that sounded deep so we called E-clinic and took him straight in. He had no fever but the cough is concerning to us.  They said his lungs sound great and its all upper sinus.  He needed blood - his hgb was 7.6 so we have a little time to spend in the med room for a transfusion (2 hrs).  His platelets are also dropping they were at 66 which means by Friday he will definitely need platelets. His ANC dropped from 10,000 on Monday to 400.  So they bumped up his last chemo today the IV push of Vincristine and that officially finishes him up with the full 4 rounds of high dose chemo.  He also got pentamidine (1 hr IV drop)  which is to stop him from getting a specific type of pneumonia. So happy to be done with chemo but dropping to 0 ANC is the worst part of the round.They told us they think that his throat is sore from the scope test we did with ENT yesterday and the stronger the vocal cord the easier it gets irritated.

 

Dear Lord,

First I would like to thank you for getting us through the chemo, please bring Nicholas' ANC up fast so he can feel better soon. We need a clean scan next week God Please get us to the next part of treatment. Please Lord, bless our volunteer blood donor today that gave blood for our boy.  Please Lord, be with my Dear friend Nicole right now and Baby Wade. My heart is with them daily.  We also need to say a special prayer for our friends daughter Kendal and that her treatment plan in Michigan is curing her AML Leukemia.

 

Please my dear family and friends ...don't just say your praying - I am asking you from my heart to close your eyes and speak to God right now ... really pray for my friends and for our son.

So we have our ENT test today! Dr. Thompson said it looked great, Nicholas' right vocal cord is crossing over - that means it is completely compensating for the left now and that means his swallow is finally strong enough for him to do the swallow study and by late next week - he will officially be eating again.  Our God is soooo amazing and His timing is PERFECT. We are so thankful to God that he is recovering so well.  Dr. Thompson whom I love having as our ENT is so informative and takes the time to explain everything.  He said that Baby Nicholas has improved so much even under the treatment of chemo that could have stopped him completely from healing during this time.

Dear God,

TODAY I JUST WANT TO THANK YOU FOR YOUR HEALING HANDS !!!! WE will continue to pray for that Left vocal cord to kick in when Your timing is right. We feel so blessed today....

Wanted to thank my dear friend Carrie R. for sending treats from home! These cookies are amazing.   Thank you Carrie for always doing little things to remind me that you are there and praying for us.  Your friendship means so much to me.

We had our normal labs today and his ANC was ridiculous from the gcsf shots. 10,300. We actually want it to be low just so he can start recovering faster. He is in a great mood and and hasn't gotten sick at all from the chemo over the weekend.  Sometimes it has a delayed effect with nausea and that hasn't happened this round.

Discharged!!! 11:00am and we are out of the hospital - So back to Target House - Nick took both night shifts at the hospital inpatient - so glad he'sable to handle the last night shifts before I will be solo with our little man once Nick goes back home to take care of Christian.  These days are long because of his counts being low and feeling like we are stuck in a room not able to do too much.  Hopefully his counts will recover well so we can let him do whatever he wants to do ....

So he did just fine on last night on chemo and tonight he does his final inpatient chemo drug Cyclophosomide (IV 1 hr) then we are done being inpatient, unless he gets a fever but we are sterilizing and praying so hard that does not happen this round. As you might notice he is finally losing his eye lashes - so glad this is the last round so everything will be growing back now!

Please pray his counts go up quickly this round and mostly that his MRI is stable, it is currently scheduled for Thursday, September 23. God's got his hands on Baby Nicholas.

So we started our day with Nicholas' ABR testing and he was a little fussy since he needed to fast for 8 hours prior to the test. The results came back and were stable. His hearing in his right ear has actually improved and the audiologist said anything can happen because a baby's hearing is not done developing until they are 18 months of age. So we will keep praying for more improvement for his left ear and and for the next test to show more improvement.

We had labs today since we are going in for chemo tonight and his ANC dropped to 400! I wasn't expecting that since they went up on Tuesday but I guess that means the drug from last week is still working through him. So we do Carboplatin (1 hour IV ) tonight and Vincristine IV Push.

Please keep The Ballew family (Baby Wades family) in your prayers.

We also want to thank God for Ryan's MRI being stable today!

 

Everyday amazes me, you never know what the day holds or what God has in store for you. We went in for labs today and as I stated I was worried this weeks chemo would be delayed due to Nicholas' ANC possibly being low from Methotrexate (chemo) last week.  Well shockingly and thank you Lord his ANC is 1400 today. We started at 800 and he has dropped from this drug every time except this round ... (I say hmmmm to the man upstairs one this one and bravo!) So chemo will not be delayed this week. Tomorrow we have our reviews for speech therapy, occupational therapy and physical therapy to make sure he's still on track doing everything he should be doing for his age. Last month they canceled all his appointments because he was on target and didn't need any appointments. Thursday we have another ABR test, (hearing test) before we do the last round of drugs that can affect hearing. Typically on this protocol they do not do another ABR in between round 3 and 4 but because Nicholas' hearing has been affected already they are monitoring him a little closer.

Dear Baby Nicholas,

You are almost done with chemo here at St. Jude! You have been so strong and yet you have endured more than most adults can handle baby. Yet you do it and still smile, I love you my boy.  Stay strong so we can get through this last tail end of chemo - God's gently pushing you along and healing you.

 

 

Spent the day today with Christian, we went to the craft store to buy jars for each other and fill them up with messages to each other that we can read over the phone nightly.  (Thank's Mom and Aunt Nan for the idea) We call them our JOY JARS. I hate that he is leaving tomorrow with Nick to go home and start school on Wednesday but I believe it is the best thing for Christian to provide some normalcy and allow him to be with his friends at school.  We went back and forth on this decision, but we decided that his academic curriculum would be different if he moved him around and he needs that stability right now. So I will be missing him like crazy and Nick will be back here on Wednesday to finish up round 4's last few drugs of chemo later this week. So Nick will be doing a lot of flying in the next few months of weekends and I will see Christian every other weekend hopefully. We also hit the Toys R' Us Express at the mall and got lunch together.  My Christian is such a sweet child, he knows I have been really sad and he told me, Mom I'm really gonna miss you.  I'm going to miss him too, even he has made some serious sacrifices for his little brother.

When I got back, I saw a post on facebook that one of the first families I was following had relapsed after 2 years and 8 months of being tumor free. I ask that you not only pray for Baby Wade's family, but also for Alyssa(AKA Lyssie ) Righter as she goes in for surgery next week and for Rachel as she gets ready for radiation.

I ask you to to pray for Baby Nicholas' ANC count to be high enough to start chemo on Thursday this week so we can be done with this inpatient chemo process!

What a week, I found myself roaming the empty halls of St. Jude miserable. I couldn't sleep - I am hurting so much for my friend right now that I can't think straight. I can't handle another night here right now - yesterday was the brutal reality that at any moment everything can change in just moments and it can be any child here. I prayed my heart out crying most of the morning. Then a bit of sunshine came in when my nurse told me that Nicholas' Methotrexate levels were at .43 which its typically .9 or .8 but never that low and my Doctor told me that the longer than use this drug the harder it becomes to clear because the body gets use to it.  So my doctor was attending upstairs and she knew I was having a rough time being there and so she told me they were discharging us as long as I was ok with giving Nicholas IV pushes of Lecovorin which is used to prevent the damaging side effects of Methotrexate. I think my doctor knew I needed a mental break and didn't schedule me to come in until Tuesday.  So our last time doing this drug and our last room number for it B2077.

Dear Lord,

I'm having such a hard time and my heart is so heavy Father .... I beg you to surround my friend Nicole and her family right now.  I thank you for getting me away from the hospital right now as it is a constant reminder of what just happened here.  I ask you daily to just protect us during this process, it has been an extremely tough week Lord. I lay all my burdens at your feet. Peter 5:7 Cast all your cares on him, for He cares for you. Lord, I'm casting them all to you ....

Nicholas is doing great and sleeping a little more than normal on chemo, it's a little harder on him this last round. his 23 hour levels were 75 which is the lowest they have been at this point.  So hopefully he will stay on track with his next draw tomorrow morning. E clinic is filled today with people I know getting MRI's and I have such bad anxiety for children whom aren't even mine.

This afternoon at 3:02pm I got a text that sent me into a panic.  It was from my dearest friend here Nicole.  She told me that she needed me now and I honestly couldn't get there fast enough. Upon getting to the exam room when I opened the door and saw their tear filled eyes my heart stopped.  The news they received is every parents worst nightmare here and we live MRI by MRI praying for mercy from God during these tests.   She and her husband were told their son baby Wade's cancer progressed and had spread through his brain and spine.  They were told that their was nothing else that can be done and that he has roughly a month. Nicole has become so dear to my heart, like a sister and we have shared this journey from the beginning together.  We would talk for hours about this process, the unknown, our personal fears and our small triumphs in this journey. She and I have a special bond that no one but her and I would be able to comprehend or relate to.  I followed her from the first day here and she was always a month ahead of me leading the way and our boys are a month apart in age. I am beyond heartbroken, I truly love this family and I love baby Wade. I watched my dear friend endure the most pain anyone could endure here and I can do nothing now but pray God gives them strength to get through this and be there for her as I know she would be there for me, that I have no doubt about. This bullet today couldn't have hit any closer to my heart other than my own son's battle.

I watched them with their car packed, I held my little man Wade and just for a moment I prayed and told God that he is property of Heaven Lord.  I was blessed by my dear friend Carrie with oil and I was able to anoint Wade last week with it.  I ask everyone to keep my friends and baby Wade in your prayers right now. The photo attached is of Baby Wade before diagnoses. He's truly so beautiful.

Precious Jesus,

I beg you to be with my dear friends and hold her hand when I can't physically be there to do so. Lord I will not question you, for you know what's best for us even when we suffer the most. It's not for us to understand why things happen - but for us to all follow your word so that we may enter the kingdom when you call us home. This life is just a moment in eternity and that we will all be together again.  Lord grant them the courage to endure, the strength only your love provides. I ask you to encompass them with a peace that comes from only you Lord.

We went in for labs today and I was taken back that Nicholas' ANC dropped from 11,300 on Monday to 800 today! I am a little bummed going into the last round tonight at such a low ANC but God has his hands on it. We were admitted and started Methotrexate at 5:30pm so at 5:30pm tomorrow he will be completely done with this drug.  We hope to get out on Sunday. Just depends on how he clears this drug. Nick's been a champ too he's doing diaper duty tonight and that means a diaper every hour for pH levels.  What a good Daddy he is!

So we start Round 4 tomorrow.  We had a med room appointment to be hooked up to fluids to start methotrexate. It's our last time having to do this 24 hour drop drug.  Tonight was yet another harsh reality when a child that was on our protocol had a bad MRI and then was told their daughter has cancer cells in her csf (cranial spinal fluid).  They were packed and ready to leave St. Jude for the next 3 months and I watched them unpack their car tonight to stay here. My heart broke watching them having to deal with the new results. I ask everyone to pray for little Miss Rachel, she's a beautiful little 3 yr old diagnosed with Medulloblastoma. She will now undergo 6 weeks of radiation here at St. Jude.

 

Dear Lord,

Please watch our our friends here at St. Jude and are ask tonight Father that you keep your loving hands on Rachel and her family Lord. We ask you to get us through the last round of chemo and that Nicholas stays strong and unaffected from these drugs. We believe in you with our whole hearts.

Today we had our normal lab visit and I was a little nervous after the week we had being inpatient.  I was praying for his ANC to be 3000 since we are starting round 4 in just a few days. Low and behold, our labs came back and his ANC was 11,300 - what a good day today is! His platelets were a little low at 87 but hopefully they will start recovering too, his hemoglobin was 10.9 which is perfect . I was extremely worried all week that we would be going into this final round of high dose chemo already knocked down from the viral thing he had going on. God, thank you for your mercy - your timing is perfect. I will keep you updated the closer we get to chemo.

To my Son,

Baby, your almost done and I am so thankful God gave us such a strong little boy.  Just a little while longer and the worst will be done. God please keep him strong!

I love you so very much!

Your Momma

Amy Grant at Target House

Tonight there was a special event at our housing and was closed to the public and was for the families of St. Jude. Christian Artist Amy Grant performed live with her band right here on the property. As a child I danced my whole life but every solo I did was to one of Amy's songs and I was always dressed in white. It's weird how her music has always been part of my life and that through this we met her.

It's been a long week recovering and the longest week since we left the PICU in Detroit. Nicholas is recovering slowly and his ANC today is 300 so they are finally allowing us to leave the hospital and go back to Target House. I am so thankful to God that we are getting out, I am not sure mentally I could take another day just sitting there watching the clock. The days of being inpatient for fever and counts are long and exhausting and so difficult because it gives you too much time to think.  When your inpatient for chemo, you feel like your at least getting somewhere and there is a plan in action.  We were hoping his ANC would be higher, but we will take any inch of improvement God is willing to give us right now. He still has cold like symptoms and I am just praying they subside before we go in for chemo again next week.

8-26Are we ever getting out of here? Nicholas sounds so congested and it's stressful waiting for his 4am lab results to come in but after 5 long days with his ANC at 0, he's finally at 100 today.  Of course I was hoping for 300 or 400 so we could leave but he's just recovering slower from this cold he caught.

Dear God,

Please do not mistake my complaining for not being completely thankful that we are finally seeing a rise in his ANC because I am so very grateful.  I just can't handle another night here at the hospital. So please no more fevers and bring that ANC to at least 300 so we can leave tomorrow.

Day 6 with his ANC is still 0 - it feels like we have been inpatient way too long this time. : ( Hopefully tomorrow it will go up!  We also ask you to pray for our friend's son here Ryken.  He's having quite a hard time recovering from a procedure.  Please pray - pray - pray

Our God performs miracles.

Day 5 and still his ANC remains 0. They keep doing blood cultures because he gets fevers on and off still. They told us fever eat up platelets and so his platelets are at 38 after getting a transfusion yesterday. That tells you just how bad this virus /cold is kicking our little mans butt. This is our third platelet transfusion this round.

Dear Lord,

Please bless our platelet donor! It amazes me that someone took 2 hours of their time to give platelets and our boy needs them and it only takes 45 minutes to get them! Please watch over our boy - he's so weak and these fevers are scary to me.  Please watch over him and shield him from cancer ever harming him again!

Day 4 and his ANC is 0 - FINALLY - he's getting blood and platelets today - they waited till they dropped to 19 which is ridiculous for a baby.  It's the first time I was upset with the doctors on the floor at the hospital - they waited too long transfuse him! He needed platelets yesterday since he was symptomatic and below 30.  his Hgb ( red blood) was at 7.8 so he needs that as well.  5 hours of transfusions today.

 

Dear Lord,

Please bless the blood donor and the platelet donor that gave my son what he needs to thrive. We ask you to watch over all our St. Jude friends too God ....

Support

Ependymoma - Ependyparents

Go to Facebook Ependyparents and Join