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Invincible Isaiah

$7,692.50 Raised!

Start: Nov 8, 2018 - End: Sep 30, 2019

Invincible Isaiah

On Monday, October 22,2018, our sweet baby boy was diagnosed with a rare, aggressive form of cancer called rhabdomyosarcoma. He is one of only 3 to 4 children in the US under the age of 1 that will be diagnosed with this rare form of cancer this year.  Isaiah was born with a bump on the back of his neck that has grown in size substantially during the first 9 weeks of his life.  After several different imaging scans, we were referred to multiple specialists at Children’s Hospital of Colorado in Denver. There we had an open biopsy performed and stayed overnight in the hospital with Isaiah as he recovered from his surgery.  We then waited anxiously for several days at home before returning to the hospital where it was determined he had spindle cell rhabdomyosarcoma. We were then admitted to the hospital to start the process of preparing for chemo.

We are so thankful for the specialists and oncology staff at Children’s Hospital for helping us get through a week of hospitalization and nonstop testing in order to start treatment.  Given the aggressive nature of this type of cancer, chemotherapy was started on October 26, 2018.

We are overwhelmed by the outpouring of love and prayers for Isaiah and felt that a website would be the best form of communication for the many,many friends and family who are supporting us on this long journey of fighting cancer.   We are so encouraged by your love and need it as we journey through the ups and downs of cancer treatment.

There are 3 easy ways YOU can support Isaiah’s Fund:
1. You can purchase any of One Mission’s great products and 40% of what you spend will be donated.
2. You can donate cash (One Mission doesn’t charge a platform fee).
3. You can share this Fund with your friends and family.
Please consider doing all three of these things!

Fund Leader: Andrea McGrath
Fund Type: Medical Causes

Purchase with Purpose

40% of every product purchased is donated

MRI results

Journal entry by Emily Thielman — May 2, 2019

It is with a very sad heart that I write this.  On Tuesday we discussed Isaiah’s MRI results with our physician and nurse practitioner.  We were devastated to find that the tumor has grown over 40% in size since our last scans in February.  They believe it did not respond to the radiation treatments and instead continued to grow throughout radiation and chemo over the past 8 weeks.  It is very rare for a tumor to continue to grow during radiation, but it is possible.  The tumor has now grown down into the side of his neck and wrapped around the major blood vessels of his neck. It has also begun to push his cerebellum over to one side.  There are further details that I will not get into, but the bottom line is that all of the treatments Isaiah has endured since October have not stopped the growth of this extremely aggressive tumor.  Our providers have discussed this with the solid tumor team at Children’s Hospital (of which they are a part of) as well as multiple surgeons including neurosurgery at Children’s Hospital.  Once again, it has been assessed that even under the most heroic efforts, Isaiah would likely not survive the surgery and if he did, they would have to remove approximately half of his neck.  St. Jude’s was also consulted regarding further options for treatment.  Our physician and their physicians are all on the same page for types of treatment options.  The reality is, for Isaiah to survive this, it would be a miracle.  I have looked at the scans and it is very obvious to me that this tumor is aggressively invading Isaiah’s brain.  He has endured over 7 different types of chemo (the side effects of which have been very difficult over the past week) and 6 weeks of radiation.  The majority of his life has been spent going to and from appointments, getting labs drawn, getting aggressive treatment and not having a normal childhood.  After discussing his quality of life, we have decided to start hospice services.  This does not mean we cannot give him further medical care.  What it does mean is that our main focus is on making sure he is not suffering and that he can enjoy the time we have left with him.

We realize that as you read this, you are grieving as well.  As much as we would like to help you grieve and answer your questions, we ask that you please refrain from asking this of us. However, if you’d like to send us a word of encouragement or let us know you are thinking and praying for us, we always appreciate those messages.  We are in the process of digesting this information and comprehending this new change and are not at a place where we can take on the additional burden of answering the myriad of questions that I’m sure are in most people’s minds.  We thank you for your prayers and support and ask that you continue to pray for Isaiah.  We pray that he will not suffer, but he will remain happy and playful when he has the energy.  We also pray that he would be spared from the worst possible side effects that may occur with this type of tumor.  We thank you for your faithfulness to us and your love.

An unexpected change

Journal entry by Emily ThielmanFeb 15, 2019

This week we headed back to Denver for chemotherapy.  During our initial evaluation with our nurse practitioner we expressed some concern that we thought the tumor seemed harder and larger than several weeks ago.  Our NP felt this was true as well, so we were admitted on Monday to the inpatient oncology unit and had an MRI done on Tuesday.  Much to our complete shock, Isaiah’s tumor has started to grow again and the extension leading into the skull is also larger.  Many questions ensued after as we discussed this with our team of providers.  In short, what this means is the tumor is no longer responding to the chemo that we have been using.  It is, as we knew and now know even more, a very aggressive tumor.  Therefore, Isaiah’s entire road map of treatment has changed, and he is now being treated with a very aggressive regimen of 7 different chemo drugs.  We also no longer have the luxury of time to determine radiation therapy at St. Jude’s.  We will be staying in Denver and starting radiation therapy a week from tomorrow after the preliminary mapping required for radiation has been completed.

To say this is devastating for us, would be selling it short.  We really were not expecting such a huge change in a short period of time, but that is part of the reason cancer can be such a difficult battle, as many of you know. We ask that you pray for Isaiah’s life as this is now something that has become a very real concern for us in the days ahead.  The chemotherapy regimen is not an easy one, and it will cause a lot more side effects than that of the other regimen we were on.

Isaiah received this first new round of chemo yesterday and the day prior.  He has kept a smile throughout the week, and continues to be a very happy little guy.  He loves watching Sesame Street and likes to talk to Elmo when he comes on the screen.  He also loves bananas!

There are many unknowns ahead and each day is filled with many things to decide.  We ask that you continue to pray for us as we sort out all of the details that come with this new unexpected change in Isaiah’s care.

Update on new scans and future plans

Journal entry by Emily Thielman — Jan 11, 2019

We completed our 12th round of chemo this week after repeating our scheduled MRI, CAT scan, and PET scan.  Throughout the course of Isaiah’s treatment there are built in weeks where  routine scans are done to measure the size of the tumor and to see if the cancer has spread.  We received news that the cancer has not spread and the tumor is getting smaller.  We are so relieved and grateful to know that the cancer is slowly dying as Isaiah continues to grow and develop.  He was a real trooper and went 8 hours with nothing to eat or drink.  He even had a few smiles left for us at the end of those 8 long hours and came out anesthesia without any complications.

Our next step is to see what the plans are for going to St. Jude’s in Memphis.  We are waiting for the staff at St. Jude’s to see these new scans and move forward with plans for radiation.  It is likely that we will be heading to Memphis in about 7-8 weeks.

Isaiah continues to laugh, play, and work hard at grabbing his feet in an attempt to roll over.  He has been transitioning to new formula as well as we discovered he had a milk intolerance that he will likely grow out of but was causing him some GI discomfort and bleeding.  Please continue to pray that he will grow and gain weight.  He is still eating well and we have not had to use his feeding tube at all up to this point.

We also ask for prayers as we look to transition to living in Memphis for 2 months.  We do not know all of what that will entail, but we are starting to plan for what we need to do to get there and what we need to do to leave our apartment here, etc.

We ask that you would keep all of us in your prayers as we know you do.  Each member of our little family of 3 is uniquely different in how we endure this season of life.  We ask that you would pray for Jonathan and me as well as Isaiah.

You are ever in our thoughts as we know we are in yours.



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