August 21, 2010

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Day 2 his ANC is 0. He has had a cough too that doesn't sound like his normal cough. It's concerning me and so I called med room and told them. 2 hours later he spiked a fever 101.0 so that is our automatic admission for at least 2 days inpatient at the hospital. They drew lab cultures and have to wait 2 days to see if anything grows off it. If it is a nasty bacterial infection of any kind it would grow in the cultures within 24 hours. So its always good when you hear nothing from the cultures. They automatically give antibiotics to start combating anything that might be going on.

August 20, 2010

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Day 1 of his ANC being 0 and I am in shock since his ANC was 7100 on Wednesdays labs. We have an hour infusion by IV to combat pneumonia and then he has his day 15 Vincristine (chemo) IV push. He's never dropped this quickly so I am in shock and he's had a little deeper cough today that is making me nervous. Hope its nothing but I hate him being at 0 already.

Dear Lord,

I pray for a quick ANC recovery ... let his little body fight whatever else he has going on also. Just watch over our little guy he needs extra attention from you.

August 18, 2010

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So he had labs today at his ANC is 7100, however his hgb (red blood) is 7.6 so he needs blood today. His platelets are also 54 which dropped and he is needing them also. So long visit in med room today to get our blood products. He also got a fever that brought us back there so they gave us an antibiotic by IV in clinic to combat it and they said not to worry since his ANC was so high.

Dear God,

Please bless our blood donor and our platelet donor today. We are so grateful that people take the time to give. Please make sure Baby Nicholas has no reaction to the transfusions. Watch over him Lord, like you always do.

August 17, 2010

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We had labs today and Baby Nicholas' ANC is 17,000 - his hgb (red blood cells) is 9.0 so that's fine. His platelets are at 71 and they are dropping so fast right now. He will need a transfusion soon. I can't wait for this round to be over! Seems like all the kids of the protocol take a hit in round 3.

Dear Lord,

Keep Baby Nicholas strong - he's doing so well - please continue to keep your hands on him!

August 16, 2010

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We started our day today with a follow up meeting with Dr. Merchant over the whole switch in chemo drugs last week. I still wanted to meet with him to ask his opinion and he seems to think the change from Cisplatin to Carboplatin was the right move for us. I expressed my concerns about doing 1 more round of chemo and whether it mattered or not. Developmentally, it's best to prolong the radiation - however with aggressive cancer - time isn't afforded. So we are sticking to the plan. We have our normal e clinic appointment and nutritional evaluation.

August 15, 2010

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Oh thank the Lord for answered prayers - this one came in the form of a nurse named Adam that has first hand experience with Mickey Buttons. So while cleaning it today it popped right out - I was in shock holding him and I pushed it back in and looked at the nurse, like "DID YOU JUST SEE THAT" he jumped up and said we need to switch it now. In less than 2 minutes of prep to complete - he popped out the old one not working and placed the new one and secured it. He did it with ease. You have no idea how relieved I am right now - no OR surgery Monday now!!!

Adam, your a blessing from God - thank you so much for taking such great care of our boy! and best of all we get out of being inpatient. Nicholas slept through both nights of chemo and we are out today!!!

August 14, 2010

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Well he did just fine on the Carboplatin (chemo) it was a 1 hr drip and Vincristine IV push. However, the Mickey Button is not fitting right, I asked the nurse (THANK GOD FOR ADAM) to test it, when he did it didn't work the balloon that holds it in place in the stomach was pulling back air! That's suppose to be saline - so there's another problem. Dr. Baker notified OR and we need to wait till Monday to have this issue fixed. I'm sad .... so we taped it into place because it is moving and it shouldn't be. So tonight he does Cyclophosphamide (chemo) its a 1hr drip.

Dear Lord,

Get us through the weekend - what a mess this Mickey Button has been .... thank you for getting him through chemo without getting sick.

August 13, 2010

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Since we switched chemo drugs yesterday, we now need to do a test for Nicholas' liver and kidneys to see how he will clear this drug. It is called a NM Plasma Clearance Injection and done in Nuclear Medicine. Once administered they will draw labs 1 hr after injected and then at 2 hr and then again at 4 hrs. So in between these labs at 11am we went to wound care to have his G-tube switched out to a Mickey Button. Well, little did I know this would create a nightmare of a day for us! As soon as she pulled the g-tube, he cried and tighten his abs. She tried once to place the Mickey Button and then looked at me and said it closed. I was in shock, I said what do you mean it closed? I was never told that could happen! I lost it and tears just started rolling down my face. I was a mess. The nurse came back in and felt so bad and brought kleenex for me. She said we will fix this today I am so sorry. I tried to explain to her it was just a rough couple of days, he had a bad hearing test yesterday, we switched drugs and now this. I just cried. She said we will fix this. He hadn't ate for 2 hours prior to that so now he needed to fast 6 more hours to be sedated to have it the Mickey Button placed.

So, during walking around for 4 hours I ran into Karen who works in the Diagnostic Imaging area where they place lines, ports, g-tubes etc. I stopped her in the hall and said we are seeing you at 4pm for placement, I am afraid this his stoma (the hole in his stomach) is going to close completely if we wait 4 more hours. She agreed and they placed a temporary catheter to keep this stomach from closing completely. At 4:00pm he was sedated and they dilated his stomach and we able to place the Mickey Button. Wheeewww breathing once again. What a mess and now we go in for chemo!

August 11 & 12, 2010

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Baby Nicholas had his repeat ABR and well - I am just sick and heartbroken over the results. We were told that he had high end hearing loss, we expected that but we were also told that he had a grade 2 hearing loss in the normal range. It's explained like this, if you say the word Dogs ... he hears it but the "S" is quieter than how we hear it. At this point it isn't bad enough to need hearing aids. What that means is that the Cisplatin (chemo) has already effected his hearing greatly. We are due for two more round of this drug and to me this hearing loss is unacceptable! I am having a hard time with it because for Baby Nicholas hearing was not a deficit after surgery and chemo is only being done to in Dr. Merchant's own words, "Buy time" because of his age and needing his brain to develop to 12 months of age.

Upon learning these results, I immediately have contacted all our team here at St. Jude, Dr. Gajjar, Dr. Wright and Dr. Merchant and addressed my concerns and told them we need to re-evaluate our plan now because Nicholas is due to start more chemo on the 13th.with them on the 12th and when we met, Dr. Gajjar could tell I was extremely upset and explained the pathology to me once again. He wants us to finish out the regiment but after speaking with audiology he agreed we needed to adjust his drugs and we are now switching from Cisplatin to Carboplatin, which is said to be fairly equal but the risk of hearing loss would not be a factor. He also said that Carboplatin is harder on the bone marrow - so recovery will be harder for Nicholas.

I of course was extremely worried about switching these drugs, I feel like I am going off their best path and doing my own path - but this happened for a reason - the hearing loss isn't terrible at this point and it can improve. God gave me the ability to understand medicine and understand what we are dealing with and He gave me the mind to research, He gave me Nicholas because He knew I would do everything I could for him and I always will. He knows my heart, my dedication to my child and the love I have for my family. So I will trust this choice to change courses for our Boy and pray God keeps him stable.

Dear Lord,

You allow changes for a reason ... I won't question that - I just pray that these changes are from you ... I am so thankful you brought me to St. hude - without them the regiment they planned to put us on back home was even stronger and longer with Cisplatin - our son would have been deaf. You have your reasons and though I am so sad over him having any hearing loss - I know you can change that and that I will trust in you today.

August 10, 2010

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Clinic appointments and labs were all where they needed to be, I was a little shocked that his ANC dropped to 1800 already but I guess the further we get into chemo the harder it is on his little body to recover. I see that finish for chemo and boy do we want to get there. Tomorrow is the repeat hearing test the ABR, little worried since the last one wasn't good. Hoping it was due to fluids in his ears.

August 9, 2010

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We are being discharged!!! His levels we .11 so I need to give him leucovorin pushes by IV 3 times to help his kidneys flush the remaining amount of Methotrexate from his body. So glad to be leaving the hospital. Though we will be right back here tomorrow to do labs and have our normal clinic appointments.

August 8, 2010

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He's now clearing Methotrexate (chemo) just fine and we no longer need to do diaper pH levels. As long as he stays on track in the next 24hrs we can leave tomorrow. Christian is loving the parent room here he's got it set up like a college dorm room lol. Tv, mini Frig and he can roam the play rooms up here and computer room. Funny how he has completely adjusted to what a crazy life style ... He's just a beautiful child and so understanding that he lost his whole summer to get his brother better. We love you soooo much Christian ... thank you for being so good for us. You are a great big brother!

August 7, 2010

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Baby Nicholas is clearing Methotrexate a little slower, so they increased his fluid intake. For us that means a diaper an hour easily, and ph levels from each diaper need to still be checked. His levels should have been around 80 and he was at 93, so it wasn't overly high to be concerned with it. It's getting harder and harder for us to be inpatient with him, he hates being confide to this little room with so little to do. They unhooked hooked him from chemo at 5:30pm - only one more round of this drug my Boy you are doing so well my love ...

Dear Lord,

Please let Baby Nicholas clear this drug fast so we can get out of her soon. Thank you for keeping you perfect hands on our boy!

August 6, 2010

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Waiting for a room - here we come round 3. We are starting late 5:30pm so we will be on this drug for 24 hours - but hopefully he will clear this well and we can get out in by Sunday.

August 5, 2010

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Exhausting day, never again will I try to do a 12 hour trip during the day with Baby Nicholas. He just didn't want anything to do with his car seat and so then I ended up holding him the whole way pretty much and he wanted nothing to do with napping. I tried this only because I didn't want Nick to have to drive all night again.

So we made it - it's 7:30pm and we are headed straight to St. Jude to the Med Room for fluid hook up for chemo round 3 tomorrow.

July 5, 2010

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We had labs today, no more GSF shots YAH!!! His ANC count was at 5,500 his hemoglobin and his platelets both went up too which is awesome that happened so quickly. He was suppose to have a full week before another round of chemo, round 2 would be administered but because his counts are so good they want to start round 2 early. The quicker we can get to Jacksonville, the better for us. So, we will know Wednesday went we go inpatient again to start day 1. His hair was shedding everywhere today so Nick held him while I shaved it. I had a good cry afterwards. It’s not that it won’t grow back – it’s the reality of watching my son now look like a cancer patient that broke my heart today.

To Baby Nicholas,
Today was a tough one for mommy, though you are doing great – seeing your perfect baby hair gone made me so sad. God has us on this process for HIS reasons and we place all our faith in him that you are healing and we are just taking the extra steps to make sure you never get sick again. You are beautiful hair or not --- I love you more than I could ever tell you, you and your brother are the greatest gifts I have ever been given. I just want to love and protect you both always.

Dear Lord,
Protect our child please, shield him from cancer and from anything ever harming him again. We believe in your word, we have total faith in you that you CAN and WILL heal with completely. Lord, please place your hand on his vocal cords, strengthen them and heal them so that he can swallow properly again. Everything is in your perfect timing and we give you all the glory for how far you have taken us. Thank you Jesus for our miracle boy – that you allowed us the chance to fight for him and give you all the glory along the way….. remaining completely and totally at your service my Lord.

July 4, 2010

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Wow it’s so tough being away from home. We miss it so much and days like today make it harder. All our support system, our family and our amazing church and friends – wow we miss you all so much! WE keep reminding each other that this is temporary and next year will be different. The Baby started shedding like a cat today, I was dreading this but I know it is part of the process. CHEMO STINKS!

July 3, 2010

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His ANC – 400 today – THANK YOU LORD! The doctor doesn’t want us to leave just yet since we had a fever so we had to be monitored until 4pm and since there was no fever – we were released. We don’t get labs until Monday so we won’t know what his counts are until then. So glad to get back to the Target House and relax and let him play more freely. Thank you Jesus for the finish of round 1!!!

July 2, 2010

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His ANC is at 100, not high but climbing and we are thrilled that it’s starting to go up. He has had a fever again today so we just keep praying it goes away. The doctor told us we get out tomorrow if his count are 400 or more.

Dear God,
Let our boy’s counts climb quickly Lord, 400 or more please we are stir crazy inpatient and want a break please. Protect our little man and heal him daily Lord.

July 1, 2010

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Once again his ANC is at 0 and hasn’t had a fever since we checked in – go figure lol. But his hemoglobin has dropped and he needs a blood transfusion today. So I guess it was best we were here now anyway. No reaction to the blood and all is well he is playful and ready to get out of here.

Dear Blood Donor,
I can’t thank you enough for the gift of blood you gave my son. As I watch your blood going into my child’s line, I am reminded how much good there is in the world. And Though you will never have a name and I will never be able to thank you personally, I just deeply thank you from my heart whoever you are wherever you are – thank you and May God Bless you for giving. I strongly encourage anyone to give blood when you can, not just when you see a Red Cross sign but make a point to give when you can – it saves lives and it is a gift and a true blessing. Find a local blood bank it takes less than an hour and you can give every 2 months. People ask all the time if there is anything they can do, I ask on my son’s behalf for you to donate blood.