Updates
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Over the last few days we had family stop by and it was so nice to see everyone that had a chance to visit. We took time to just do normal things, like go to the Cider mill.
Simple, but wow we have never appreciated simple as much as we do now. It was so nice to be together. Baby Nicholas' is loving being home and I didn't realize how much more work it is to be home with him where there are multiple rooms to chase him from there. We got so use to living in one room in Memphis that having multiple rooms to chase him crawling from and as soon as he sees the stairways going up he shoots up them in seconds. It's refreshing and tiring lol.
I can tell the baby loves to be home, I told Nick this trip flew by and I am so sad that it's over. We got the chance to go to church, Brightmoor Christian Church - we miss you and love you so very much. Our church held us up in prayer brought us on stage so everyone could see the little guy they have all been praying so very hard for. I was filled with tears - it's overwhelming the love and support that awaits us back home. We are very blessed to have such incredible family, friends and an amazing church behind us!!!
I am going to miss my Christian so much. I will see Nick a little more, but Christian needs to stay in Michigan and enjoy the holiday fun with his friends. We are trying so hard to keep things normal for him as he too has sacrificed so much.
We are home!!! It's a whirlwind of mixed emotions being here - nothing feels the same, yet it is. Baby Nicholas slept through the whole flight so it was an easy trip for him and I. It was so great to see Christian running into the airport to greet us. Even though it's temporary, it's good to be with my family - all of us together again.
Today we met with our clinic staff and Doctors while we are here. Annie from the Florida Proton Center coordinates the visits from Nemours Children's Clinic and Proton. It's like having on call Doctors in case of fever etc. I am attaching a photo from yesterday in recovery of our boy. It's so tough to see him sedated daily and watch him like this after. This is what I will see every single day Monday -Friday for 6 weeks here.
We were suppose to have Baby Nicholas' simulation CT scan today but the proton machine is down and so we can not do it today. We still kept our appointment so we could sign paperwork and see the place and get everything ready regardless. Dr. Marcus met with me and told me that Nicholas' hearing and hormones will not be effected. I asked if he needed to see the simulation before telling me that and he said no. So wow am I relieved about this!!!
Today is the first time I have left Baby Nicholas since the PICU in May, leaving Nick to take care of our little guy for 2 days. I am heading to South Carolina to see Nicole and be with her family. I have never been to South Carolina, it's so different from anywhere I have ever been. She picked me up from the airport, we grabbed lunch and then headed to her home where people filled her home, family and friends and knocks at the door from neighbors bringing dish after dish to her home. I now know what southern hospitality really is. I hung out with Miss Lauren, Nicole's 3 year old daughter and she's just a total doll. Sweetest little girl dragging me outside and inside, then inside, back outside again. I was glad I got a chance to know her since the only time I saw her our children were always sick from chemo and counts were low so we never got to do anything together with our kids. She's an amazing little girl and so much like her Momma!
People close to me know that through this journey one family, the first I met at St. Jude - the mother, Nicole became my sister. Over the 4 months of treatments we spent hours texting, calling and checking on each other and were there for each other. We share a bond that only someone that has experienced this pain can fully understand. I have been sleeping for a week with my phone under my pillow in case she needed me. At 3:40am I got a text from her that simply said, "He's finally free". At 3:30am Jesus took Baby Wade home. I cried for him, I cried for his Momma who fought this disease for her son with so much love and dedication. If you knew this child, you knew there was always something special about him, he always smiled and always laughed - his spirit was beautiful and gentle. So today, I will place this information up that his mother wants people to know and no doubt she will remain a warrior against childhood cancer, as we all should.
We arrived safely to Jacksonville Florida around 9:30am and we are exhausted. Nick drove straight through the night and I drove the last hour in the morning while he and Nicholas cat napped in the back. We left Memphis around 7:30pm so with the time change is was roughly a 12 hour trip. Baby Nicholas slept most of the way - this is the only way to travel with him while in a car. Aside from it being a long night for Nick - the ride wasn't too bad.
We are now getting settled into our temporary condo here in Florida, so that means we will be upakcing everything we shipped and heading out to stock up on everything we need while we are here. Long day!
Baby Nicholas got his fiducials today, which I mentioned a few days ago and explained that they were placing 3 different screws in his head for mapping for radiation. The procedure was done at Le Bonhuer Children's Hospital here in Memphis. Dr. Klimo part of Dr. Boop's team placed them. The procedure itself took less than 15 minutes. He woke up in a silly great mood and without the bandaids on his head you would have no idea he had a procedure done. God continues to amaze us with how strong he has made this little boy! He came back and ate well and is now resting. One more day left here in Memphis! Tomorrow Nicholas will have his Hickman Line removed and we will have a port placed under his skin so we will be done with cords and line changes (whewwww this is a lot of work for Nick and I to do) He will also have another ABR hearing test to make sure everything is still stable.
We started today with an endocrine test, this test is done to see if Baby Nicholas growth hormones were affected from his surgery. These tests were 2 1/2 hours long and 4 different draws of blood while ever 30 minutes they pump different hormones into him to test his levels. They tested his growth hormone and they told us anything above 10 is considered good, Nicholas was 26. They tested his stress hormone, which I didn't even know we had- I told the nurse boy I wish I didn't have that hormone! (LOL) Anything 8 and up was good ant Nicholas was at 10. So they are certain that neither hormone has been affected from the surgery or from chemo. 
We had our RO appointment today with Dr. Merchant. Baby Nicholas was sedated for his CAT scan and MRI that will map out his brain for radiation. They will take the first MRI from Beaumont Hospital when he was diagnosed with the tumor and they will lay that MRI over the new one without tumor for placement. On Wednesday he will have fiducials placed in his skull. Fiducials are really small titanium screws that they place under the skin so that each day during radiation treatment they will do multiple xrays for may certain he is in the exact same spot so that no other brain tissue will be exposed to the radiation. They also use a mask that he will be fitted for today during simulation that locks him in while he is sedated so that he does not move during treatment.
Today started off with bottles and sippy cups and Nicholas didn't want anything to do with them. So we decided to try to spoon feed some stage 2 pears to him. After the first bite he was pointing at it for more!!! I can't tell you how exciting that was for us because we haven't really seen him eat in 2 months when we tried it and really he hasn't ate in 4 months total. So we are thanking God for bringing that swallow back, we prayed for months that this would happen and it did - ANSWERED PRAYER!!! We didn't know if it would take days or weeks to get him interested but today he ate food 3 times and he did wonderful. So obviously our day was great because our son ate!!! We still are working on him wanting a bottle and or sippy cup but hoping that he will find interest in that soon.
So we started a day with a call from Dr. Wright, she called to let us know that Nicholas' CSF (Cranial Spinal Fluid) was clear and had no cancer cells in it. They did the lumbar puncture yesterday during the MRI. We did a barium swallow test today. They placed Nicholas in front of an x-ray camera and we gave him food and different forms of liquid that has a contrast to show if it goes into the lungs or if it goes to the stomach. He was a hand full and it was a struggle. but we got the test completed. He swallowed perfectly! After 4 months to the day, our boy is now able to swallow! This is such a blessing! There are some children that never get their swallow back or sometimes it takes over a year to return. Our only problem is that now that he hasn't ate for 4 months - he doesn't want to now. We know it will be a gradual thing and it wasn't going to be an over night transition. The one thing we sure have learned is patience. Everything about this process just takes time. Baby Nicholas is gaining strength daily and his ANC was 4,900 yesterday. He's playing and acting like an 1 year old and sporting that new bottom left tooth too!
Praising GOD!!!!! Nicholas' scans were clean and that means we are headed to Jacksonville for Proton radiation. It is in moments like today that life can change completely, I have learned that through my other families here. Though I celebrate this MRI - my heart is also heavy for my friends that did not have good scans in the last few weeks. Today I will count my blessings. So we are in the clear for the next part of treatment! We have a long week ahead of us filled with tests etc. Tomorrow Nicholas will have a swallow study .... we pray he's able to finally swallow liquids. Food isn't the problem so please say a prayer we get good results tomorrow too!
ANC is 1000 and no more fevers!We are discharged - but not until the hospital staff came in and threw confetti in our faces and sang Happy Birthday to him! They gave him toys and balloons and a signed poster from all the nurses. He's also sporting his first bottom left tooth now !!! Big week for our boy.
So our ANC is 100 today and he's still spiking fevers without Tylenol so we have no clue when we are leaving. All cultures are not coming back with anything which is GREAT ... because it is nothing serious but it sure is keeping us stuck here right now and we just want to get out of here..... the doctors told us 24 hours without a temp and we can leave but that's not happening yet. Praying for his ANC to go up tomorrow!
Day 3 at 0 ANC ... ah these days inpatient are the toughest emotionally. Too much time to think and no clue when we might leave. It's so tiring siting in these little rooms ... we just want out! Here's the photo of our door to our Jude Jail Cell ..lol just kidding.