Matthews Cancer Adventure

Sibling Saturday! 

It us always great when the siblings come visit during the hospital stays and today was no exception.

Christi arrived first bearing food and of course she brought her usual cheerfulness with her too.

Later in the day Jesse came for a visit and gave Matthew someone to talk football with!!

What better way to spend day T-Minus 3!!

Please keep this coming Tuesday in your prayers as that will be DAY ZERO meaning Stem Cell Infusion Day!!!

Today Is T-Minus 4 days to Transplant!!!!!

Lace Up For Life!

It apparently is never boring at the BMT Unit.

First – and foremost, Matthew is feeling great which pleases the doctors to no end!

Second – All the patients briefly got sequestered in their rooms as they made absolutely sure that any dust from some nearby construction was cleared out. Dr. Cranz cares so much for this unit and had all hands on deck, got everything wiped down, put sticky mats outside of all the rooms (not very slipper friendly) and since the rooms are ‘positive pressure everything turned out great.

Third – Matthew got a few minutes free from his IV pole to join the Lace Up 4 Life event where they allowed the ‘kids’ to walk up and down the hall and be cheered on by volunteers, nurses, doctors and others to help them with their time here in the BMT.

Fourth – Matthew got a visit from Valerie Anderson of the His Grace Foundation. She not only brought a couple of nice gift baskets but also stayed and visited for a few minutes. We keep running into other people with A&M connections and that opens up so many conversation opportunities. (Their was also a swimming connection) The most interesting thing she shared was that her husbands great grandmother wrote the lyrics to the A&M 12th Man song. How cool is that?!!!!

Fifth – It was finally lunch time. All the interruptions and distractions can actually get in the way of lunch but when the time came Matthew was ready … even for hospital food!!

Sixth – Matthew decided to have a nurse from the VAC team check on his PICC line since the sterile cover was getting a little snug. She said all was great but decided to put on a new dressing anyway. (No picture for this, sorry) This nurse had a connection to school bands so we got to talk about that for a while!

Seventh – Nurse Robert pops in the room, after another day with lots of lab work to see how Matthew’s body is dealing with the chemo, and announces that they are going to be able to reduce the amount of the first chemo per infusion for the remainder of the doses he will need! Thank you God!!!

Eighth – It was time for Mom to come bring food and take over the main duties for a few weeks. I have to tell you, Janet is really amazing!!!!! She spent so much of her time here this last year. She would just say, “I can’t imagine doing anything else. It’s what a mom does.”, but I want to give her due praise for being the awesome mother and wife that she is!!!!!

Finally – Dad was on his way home. I, too, can’t imagine not being right there the whole time but their are other things that need to get done and tended to. Thankfully the drive down to TX Children’s isn’t too bad at the right times of the day so I’ll be down plenty while Mom is on duty, especially on Stem Cell Infusion Day!

Thank you all for your continued prayers, thoughts, love and support!

Countdown to Transplant!

Well, it is t-minus 5 days to Matthew getting his Stem Cell infusion and as usual the morning started with an abundance of visits from a variety of people including Volunteers, Doctors and Nurses. They really pay close attention to their BMT patients here at TX Children’s Hospital and they are all such nice people!

Matthew feels great and was up for another walkabout so we cruised what there is of the BMT floor and then stopped for a little, and I mean LITTLE basketball. I know that Matthew can’t wait to be able to shoot full size hoops again but it is so great to see him sinking 3 pointer after 3 pointer in the BMT Media Room.

We also got a visit from Dr Foster today!!!!!
Though Matthew is in the extremely capable hands of the BMT doctors and nurses she will be keeping up with his progress and stopping by for visits as part of her normal rounds. The day is always a little brighter when she can come and visit.

What’s All This Vlogging?

Matthew ‘follows’ this video blog (vlogger rather than blogger) of this guy called Casey Neistat and we watched a couple of those ‘episodes’ together. They are very travel log like but this guy is quite interesting to watch. It is great to share this with Matthew and listen to him discuss and analyze things.

QUOTE of the day
(Dr. Foster) “You do not look like someone who is going through Bone Marrow Transplant, how does the chemo feel?”

(Matthew) “It just feels like I’m getting my IV fluids!”

Distance Learning Is A Blessing!

It must be an Aggie thing! Matthew logged on from his BMT room to do some of his studying for his distance learning class through A&M. This is such a great thing to see and the folks at A&M are really willing to work with him to keep things on track.

In the afternoon Dr. Martinez, his BMT version of Dr Foster, also made her rounds and was quite impressed by how well Matthew is tolerating the first chemo. Thank you Lord and we pray that this will continue!

It Is So Good To See Mom!

In the evening Mom brought Matthew some dinner, since with his particular circumstances he can eat more regular foods, and then help him fill out the forms for a charity that does a blessing called “Dec My Room”. This charity finds out what a patient is interested in and then brings things to the room and decorates it so that the patient will have an ‘environment’ to stay in. This sounds so very cool!

Giving Thanks

As always, we thank God so very much for how well Matthew is tolerating this treatment and pray that He will grant Matthew a smooth, infection free, quick road to being en-grafted with his own Stem Cells and new Bone Marrow!!! We also thank all of you for all your prayers and support.

If you are moved to do so please check out Matthew’s GoFundMe page:
https://www.gofundme.com/matthewsadventure

Out and about!

Day -6

What? Why day -6? Well, for Bone Marrow Transplant they count down days from admission to chemo to stem cell infusion from -7 to 0. They then count back up. i.e 7 days from 0, 14 days from 0 etc. One person referred to Day 0 as a sort of new birthday.

After the usual flow of what seems non-stop visitors, all of whom are wonderful people, from doctors to nurses to people letting you know about what is offered to patients and families, we got visited by the physical and occupational therapy ladies. They made sure Matthew is physically strong and able, which he is thank God, and then took him on a walkabout. Now, on the BMT floor that isn’t too far but they say anytime he can get out and walk he should. It really helps get through this process, in many ways!

Then, a little later, Craig, from His Grace, stopped in to give Matthew a back massage. He is a great guy and was here before when Matthew was on this floor so he remembered him and talked to him alot.

The first day is almost behind us and all is going well. Matthew is sharing some Norway pictures with Heather #1 (he has two nurses named Heather) and it is great to hear all these stories all over again.

Mom will be here soon, bearing food for Matthew, and then we move forward with more treatment heading to day -5.

Thank you all so very much for all your prayers and support!

Let No Neuroblastoma Cell Remain

Today began with Matthew getting a PICC line placed for use with the Bone Marrow Transplant. The procedure went very well.

Next we went up to clinic for some pre-admission labs and a visit with his new nurse practitioner Stacey.

Stacey asked if we knew the results of last week’s many tests. We hadn’t heard yet so she shared the results with us.

Matthew’s Curie score is still at a ZERO! Thank you Lord!!! And his bone asperation came back negative for any sign of disease. Heart and lungs are great too! What a great way to head into this next part of the Adventure.

We were cleared to take a short break so we took advantage of the time to make a quick trip to get Matthew some much needed food, then he was finally admitted. 

We humbly ask you to keep Matthew in your prayers. May the Lord bless you all!

No He’s Not Sleeping!

Well, at least we don’t think he’s sleeping!!

Matthew is so patient with all this testing. From way back when he had his first scan to sitting still for 6-7 hours as they harvested his own Stem Cells through every MIBG and CT scan since then and all the various other procedures.

This is the last of the testing, his EKG earlier and this MIBG scan, before admission next week for Bone Marrow Transplant. Though it will mean a 4-6 week stay in the hospital, when he is released he will have rebuilt bone marrow from his own Stem Cells. 

We can’t thank you all enough for all your prayers and support. We appreciate it so much! 

Peg Shares Some News!

Today started out with a visit to clinic. After the usual bloodwork Matthew’s nurse practitioner Peg came in to visit with us. When she said the CT scan looked good Matthew asked if we could see it. He was interested in how well his bones were mending after getting all that disease out of there. The lab report said “unchanged appearance” which is actually quite good news. Then Peg started looking through the scan and noticed that areas that used to be thin were now looking thicker. After many scrolls through the scans she could only fine one small area where she thinks it might still be thin.

Thank you Lord!!!

This doesn’t mean Matthew will be jumping off buildings just yet, hopefully never, but his bones are healing quite nicely. 

While waiting in clinic for the time to go down to surgery Matthew had a visitor. Larry from the Snowdrop Foundation gave Matthew a medal that an Ironman Competition winner donates to be given to kids going through cancer treatments at TX Childrens Hospital. They call it Bling For Bravery!

After the clinic we headed to Bone Asperation and Biopsy where, after a little waiting, Matthew was in and out of surgery in 15 minutes and when I saw him in recovery he was one happy young man! Probably the pain meds or anesthesia they gave him!!

Then it was on to get his MIBG injection for tomorrow’s scan and then head home.

The ride home is always great but with Matthew still just a little happy from the procedure it was extra fun! We played a rousing game of “Pick A Phrase From The Current Song As Our Search For What To Listen To Next”. It is great fun. You should try it!!!!!

Tomorrow is an EKG and the MIBG scan so we, as always, appreciate your prayers! We know it will still show NO EVIDENCE OF DISEASE”!!!!!!!!!

Testing … Testing

We are in final approach to Bone Marrow Transplant and that means a few days of visits to TX CHILDRENS HOSPITAL  for a variety of tests. This morning  was a CT scan (pictured) to show just how well his bones are recovering and then after his favorite lunch …

  (California Burger from Cafe’ Express)

… we headed back to the hospital for an Echo-cardiogram of Matthew’s amazing heart.

As always patience was required but before long we were in the car and heading home.

It is great to be on this road to Bone Marrow Transplant and we can’t thank God enough for all the blessing He has so graciously show Matthew, and us.

We give God all the glory and are so very thankful for the success of the treatment plan Matthew is on.

Thanks also to all of you for your many prayers and thoughtful, encouraging messages.

Tomorrow we’ll be back for more testing!

Hives and Rash Means a Change of Plans

One day recently Matthew woke up a little itchy and by later in the day he noticed that he was getting some hives. Being the smart young man that he is, and being over at sweet Emma’s house, he asked her parents if they had any Benadryl. He felt better after the medicine with regards to the itching but the hives continued to spread and get worse throughout the night. By Saturday noonish and after a few calls to the Doctor On Call we made a trip to the Texas Children’s Emergency Department. They gave him as much intervention meds as they could and he seemed to be getting better, or at least no worse, so they sent us home with a couple of prescriptions. By the time we got home the rash seemed worse. We were advised to keep him on the meds for a couple of days and as long as his breathing stayed fine this should run its course and be gone.

Patience …

Over the next few days some places where the hives started were getting better but then it had spread to other areas. Thankfully we had a clinic visit coming up and would get to see Peg and Dr Foster and show them the hives and rash.

The clinic visit was actually Matthew’s pre-admit clinic for cycle 5 of the Immunotherapy. They did the usual labs and the things we usually ask about, his hemoglobin, platelets and ANC were all great. Thank you Lord for that news since this means his bone marrow is functioning well! But what is causing the rash? “Should Matthew be admitted for further treatment with this rash?”, we asked.

Looking a little closer …

Peg, Matthew’s nurse practitioner, decided to look closer at some of the other numbers from his blood work. Sure enough one of the markers was high. This caused Peg to consult with Dr Foster and review Matthew’s previous bloodwork. After what seemed like hours both of them came back into the room and said that after reviewing the bloodwork associated with the Immunotherapy they can say that Matthew was having a reaction to the special white cell stimulator shot that comes as part of the protocol. It just hadn’t manifest in any reaction until this last treatment.

Change of plans …

So, what does that mean? Well, since the antibody treatment protocol must use the stimulator shots Matthew will not have a 5th cycle of Immunotherapy. He will now get a few weeks off to rest up, gain some weight, and be ready for the Bone Marrow Transplant which is coming up next.

Prayers …

Please continue to keep Matthew in your prayers. He has been blessed to be declared “cancer free” with “no evidence of disease” and we pray for him to stay that way through BMT and for life!

Since he has his own stem-cells in the bank waiting for the hospital to give them back to him during BMT that whole process is anticipated to go smoothly. They just need to keep him clean and clear of any possible infections until his stem-cells can rebuild his bone marrow. And Matthew needs to prepare for the extended stay needed to recover and rebuild his marrow. Please pray that the time will pass quickly and without incident. Once he is showing good blood numbers  with his new bone marrow they will be able to release him to come home. And that is always best because it means he can see sweet Emma.

May the Lord bless you all and keep you!