Matthews Cancer Adventure

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!

Zero is a Great Number

Family and friends,
Today is admit day for the beginning of Matthew’s consolidation!!

It will be another cycle of the Immunotherapy.

This is the treatment that got him from a Curie score of 23 to 0 to which we are very grateful to God!!! He has tolerated it well each of the previous times. This is part of “bridge treatment” to Bone Marrow Transplant in September.

Your prayers, thoughts and support, as always, will be appreciated. And of course we will keep you informed

🙏🙏🙏

Cleared for Departure!

This is a bit of a long story so bear with us.

In the last post we shared with you that Matthew was declared in “remission” and that the words “no evidence of disease” and “cancer free” were used by his primary physician. On the heals of that a previous opportunity would suddenly resurface.

Some many months ago sweet Emma’s grandmother and grandfather had asked if they could take Matthew, along with Emma, her Mom and her little sister, with them to Norway as they traveled there to celebrate their 50th Wedding Anniversary. With the treatment plan always in flux it was just not possible to commit to allowing him to make this trip. We not only didn’t know where Matthew would be in treatment but also we were unsure if his bones would be up for a trip because they are still recovering from the disease. A trip might just be too scary at this time. But with the good news from his doctor this trip now seemed possible.

What a difference 15 hours make!

From the start of wondering if Matthew could even still go to Norway, until we had everything working out, a grand total of 15 hours passed. And so many things had to fall in place fast:
– We had to get official permission from his doctor
– His doctor had to write and send a letter for Matthew to take with him on the trip
– We had to contact the travel agency and see if there was any room on the tour for him
– The travel agency had to get him on the same flights and staying at the same hotels
– And Matthew had to get packed and ready to go

We are so grateful that all worked out and Matthew was able to be blessed with this trip.

Sweet Emma’s grandmother and all the family on the trip took to Matthew so quickly and a great collection of memories are now in the books.

GREAT NEWS!!!

What could be better than hearing your C.N.P. say your sons cancer “curie” score has gone from a 23 to a 1?

Hearing your doctor say that the 1 is really a ZERO!

What could be better than hearing your doctor say the 1 is really a ZERO?

Hearing your doctor say your son is in “Remission” and then, as you are leaving, hearing her say, “Go! Enjoy being CANCER FREE!” !!!!!!!

When Dr. Foster first came in the room she said that other oncologists at home and AROUND THE WORLD are referring to Matthew as the “miracle boy”!!!!

We can’t even express how we feel … We are so thankful that it was God’s will to bring Matthew to this day and we believe that God certainly does hear and has answered prayers!!!!!

Is this just a coincidence????
– His oncologist was in Australia for a conference of top docs for this specific cancer from around the world when Matthew’s scan results came in. So … she was able to share them & get consensus from docs around the WORLD about the next step!!! This is so great since he is the only one in the world with these results!!!! We’re breaking new ground and charting a new course!!!!!

When asked Dr Foster said that the results they were expecting, after the minimal progress from the first 7 cycles, was at best to go from the 23 to a 10, 12 or 15. Needless to say, their highest hope for this last treatment wasn’t even close to what occurred! Just amazing! When dealing with such a stubborn cancer this is truly a miracle!!!😊

Matthew’s response is not something they have seen before which means that his Adventure is Charting A New Course!

Because of how aggressive this cancer is, even just one or two pesky cells floating around looking for a place to hide, more treatment is needed to ensure all of those cells get blasted. More on that later…..

Matthew’s response to the Immunotherapy is not something they have seen before which means that his Adventure is Charting A New Course!

We are so thankful for your prayers, love and support! We sure would like it if you could continue in prayer with us!!!

Cautiously Ecstatic

Mom, Jesse, Christi and I watched the latest MIBG scan with great hope and lots of prayer. Mom and I kept looking at each other and whispering that the scan on the screen didn’t look like what we had seen before. We didn’t see it lighting up in areas that had previously been filled with tumors. Not being doctors or radiologists we were cautiously ecstatic. Are we really NOT seeing what we think we aren’t seeing? Scan after scan we kept NOT seeing the bones light up in areas that previously looked like, as Matthew’s C.N.P. Peg would say, a Dalmatian. But we decided to eagerly await the report from the professionals.

So, after the scans were done, and we were leaving the hospital, Matthew leaned over and said, “Judy (the MIBG scan tech) told me that things look very different!”. And the smile on his face was just about as wide as a smile could get.

(Matthew and MIBG tech Judy)

We left the hospital in our cautiously ecstatic state and went to one of our favorite place for lunch, the Hobbit Cafe’. What a great time that was. Lots of laughter and blessing fueled by our eager anticipation of getting “the call” either that evening or the next day.

(Mom, Dad (taking the picture), Jesse and Christi at Hobbit Cafe’)FdWe did in fact have to wait until the next morning but then Mom’s phone rang. “It’s them!” she said. “Matthew come on downstairs. It’s Peg calling with the report!”. Amomnd then Peg proceeded to give us the best, happiest, most praise worthy news we could hope to hear.

We couldn’t be more GENUINELY ECSTATIC now.

We thank the Lord for this blessing and give Him all the glory!!!

And we also thank all of you for prayers, thoughts, love and support. We still need all of that as we move forward but it most certainly is HAPPY DANCE time!!!!!!!

NEXT UP – MIBG Radiation Therapy in Ft Worth … just to get that last little bit!!!

Proud Parents

On June 4th, 2016 Matthew walked the stage at NRG Stadium with his senior class from Klein Oak High School and received his diploma.

We are so thankful to God for this very special day. Matthew worked hard through wonderful and dedicated homebound tutoring given by Coach G and he made all the requirements for graduating on time. We are also thankful to so many at Klein Oak and in Klein ISD, including Dr Brian Greeney, Lance Alexander, and Allison Wallace, who really went above and beyond to work around the treatment cycles as well as times when Matthew just didn’t have the energy to focus on AP Calculus and AP Physics. When he was feeling good he buckled down and studied hard and tested very well. He is certainly ready, as much as anyone can be, to take that next step into college life and focus on getting his Mechanical Engineering degree!

As parent, seeing all he accomplished while going through so much, we couldn’t be more proud!! We give all the glory to the Lord and pray for blessed college years and whatever his long life will bring.

NEXT UP – Another cycle of Immunotherapy. Your prayers, as always, will be appreciated!