Matthews Cancer Adventure

All is good!

Well, at first, 2 days of TPN (IV food) at home was on the menu. After some training I felt confident that I could connect and disconnect the TPN to his PICC line safely. 

We were literally packed and ready for departure. Waiting on a dressing change and instruction on how to proceed outside of this very clean and sterile room.

Then the doctor stopped in and mentioned that if Matthew was willing to stay one more night at the BMT and have labs done again in the morning, after a day off of the TPN, to check his potassium levels offnof the TPN, he could go home first thing in the morning without the need for any home IV food.

In true Matthew form he contemplated it for a short time and then announced that staying made the most sense because it would simplify things.

He then worked on some schoolwork, ate some soup, drank two juices and settled back to await Mom coming down to keep him company until morning.

Matthew will be ready and eager to go home in the morning and all that’s needed is a little patience and a quick visit from the doctor tomorrow to give him the potassium results and the official “You are released … Go Home!”.

Looking Homeward!

As I saw Matthew on the stair stepper Mom had me bring for his long BMT stay all I could think of was, “It looks like he has his eyes focused on home”.

Well … if all things stay on track, the doctors could release him to go home as early as tomorrow between 11am and 1pm!

Today Matthew has been focused on slowly consuming enough calories to prove to the doctors that he won’t need to be sent home with any IV food called TPN.

Mom is on her way with some food so we feel pretty confident that no IV food will be needed.

Every time they mention a Friday departure a huge smile comes onto Matthew’s face, but I imagine the smile tomorrow will be even more huge!

I also suspect that knowing how soon he will get to see sweet Emma has something to do with how happy he is tonight!

We are so thankful to God for His grace and mercy. And we can’t thank you all enough for your prayers and thoughts and support.

The Envelope Please!

Valerie from His Grave Foundation made another visit today. She is such a sweet lady and doing so much for the kids on the Bone Marrow Transplant floor at TX Childrens Hospital. For Matthew she came bearing an envelope! Inside the envelope was an application for a possible scholarship from His Grace. As we head down the post BMT road, and the Adventure continues in a different and better way, Matthew will appreciate this blessing.

As for other news, Matthew is rwmaining fever free and his numbers are holding very nicely. So nicely in fact that they continue to reduce the amount of meds he is on. And so well, in fact, that they are even talking about a possible Friday release! Thank you Lord for these steps in the right direction!!!

He started eating food again yesterday and is continuing the same today. His 18 hours of IV food should be reduced to 12 hours tomorrow. If he gets his oral nutrition level up by Friday he might even get released without needing the IV food at home. If only the hospital food tasted better. He could have some outside food but it would need to be made fresh and get to him quickly. They want all their patients to eat extra careful for a few months after engrafting.

Matthew is currently hard at work catching up on 

How Sweet The Sound!

So, it was great to hear the words “No evidence of disease!” come out of Matthew’s doctors mouth, twice.

But even greater was to hear “You are engrafted!”
They say that when a Bone Marrow Transplant patient is at an ANC of 0.5 (500) or greater for 3 days that indicated that their Stem Cells have engrafted and their marrow is funtioning.

Matthew went from an ANC of 0.0, no immune system, to one of 0.5 in one day and everyone was happy. Then the next day it was at 3.2 (3200) and everyone was excited. Then today his number was at 9.96 (9960). This is over only three days. And the doctors are amazed!

This should mean that the trip home is getting very close and that makes Matthew smile very big!!!!!

There is still the weening off of a few meds that were required when his Stem Cell engrafting brought with it some fever. They are so thorough here at TX Childrens Hospital Bone Marrow Transplant Unit that they want to make absolutely sure that he is ready to go home before releasing him.

Thank you all for all your prayers. Please keep them lifted up as there will be a little while before his immune system, though looking very very good, is “mature enough” to be fully protecting him.

But, given how well his immune system is bouncing back, and the fact that they are his own Stem Cells at work, it is our hope and prayer that this time will be short.

May the Lord bless and keep you all!

Two Visitors!

Matthew was blessed recently with two wonderful and cheerful visitors.

One was Mom’s best friend Melanie.

She always brings her smile and positive outlook with her. You might think that she came to be supportive of her friend (mom), and you’d be right, but she also came to bring some smiles to Matthew. It worked!

Then sister Christi came by for a visit. She always brings good cheer with her … and a few treats, both for Mom and Matthew.

This was when his immune system had barely started to bounce back. Matthew had gone from an ANC of 0.0 the day before to a 0.5. That was much better than the doctors had expected and thought he was running a small fever they weren’t concerned and they were very happy with his progress.
Thank you all for you prayers and support!

(Again, because she wrote it so well, I’m just boldly stealing Mom words)
Matthew Update:  Well, the inevitable is happening – losing his hair again. 😢 

This is 1:00 this morning when he asked me to cut it short.(step 1) 

He really should have lost it doing the immunotherapy but, thankfully, it only thinned so we’re trying to focus on the bonus months of hairiness! 

He also hit a true zero today with his ANC (blood indicator of NO immune system) so I’m tracking down every germ with a vengeance! His mouth is so sore that when he tries to talk it sounds like he has 3 socks in it – haha, so I’m learning his unique brand of sign language. 😜 

Even though I’ve done stupid sock puppet shows & things to distract him, Matthew winds up cheering ME up at the end of the day. 

On the stair stepper just now while getting platelets. His doctor laughs & says she can’t believe he feels like doing that.

He’s a true winner in my book. (I know I’m bragging excessively, but I’m just so proud & I thank you for your indulgence. I know most of you understand 😊.)

(This update is a total steal from something Mom posted)

Matthew is toughing through the pain & nasty symptoms that accompany an immune system loss … without morphine, so far. They keep offering it like it’s free candy! The way he peers up at me with a precious smile as he pukes up bile into a bucket (sorry if TMI 😬) makes me tear up. I wonder if he knows he’s allowed to complain? 

Things picked up this afternoon & he was energetic enough that he was speed-walking the halls & swinging that IV pole so fast around the corners it was making me nervous 😳 & inspired one nurse to shout, “Whoa! Speed limit!”

All in all, a thankfully uneventful day!

Thank you, Lord!!!

And thank you praying friends 💗

Feeling Very Thankful! 

There is no way to adequately describe how thankful we are for how day ZERO went. Matthew was blessed to have a great team looking over him and caring for him including Heather #1 and Heather #2.

The actual Stem Cell Infusion only took about 15 minutes. Afterwards, like after any blood product infusion, they monitor you closely for about 4 hours and then, if you are incident free, you are back to the normal monitoring and whatever activities you can think of to do that your doctor will allow. Matthew wanted to shoot some hoops with mom!

He was able to help mom with her form and as you can see she was being very competitive 🙂

6 hours after Stem Cell Infusion, with all vitals looking good and amazing everyone, it was time for dad to grab up the laundry bag and head home but not before bringing Matthew some Whataburger. 

We thank you all for all your prayers, especially on this special day. It is, as they say, another birthday of sorts. It is surely a day we will never forget.

Now, on to engrafting, but that part is out of our hands and in God’s control, as everything is, always!!!