Isaac is our second born son; his name means ‘laughter’ and he adds a lot of it to our home. He has an infectious laugh and a witty sense of humor so we are always telling him how aptly he is named. (This does not seem to deter him from wanting to change his name to either ‘T-rex’ or ‘Jake’. Tough call between the two, I know.)
He spent a week in the NICU when he was born due to complications from a hereditary blood condition (HS). After a complete blood exchange-tranfusion and lots of breastmilk, his jaundice relented and we brought Connor’s little brother home happy and healthy, albeit still slightly yellow tinted.
Most young children with HS suffer no ill-effects other than being slightly more susceptible to illness/infection and having low hemoglobin. This was true of Isaac. All of our hematology appointments were wonderfully uneventful. We were prepared, by the hematologist who was caring for Ike at the time, to expect an elective splenectomy around the age of 10 in order to spare him a repeat of his dad’s medical history (suddenly very ill at age 16 and required emergency surgery to remove both the spleen and gall bladder). The plan was to be pro-active in managing Ike’s blood condition so that he could hopefully keep his gall bladder and avoid becoming very ill.
In February of 2012, we were living in the UK when Isaac began having random episodes of stomach aches followed by vomiting. It seemed to occur mostly in the evening after dinner and happened perhaps once a week. We didn’t take much notice at first. This strange, random vomiting continued into March. I would get calls from school to come and collect him because he had thrown up after lunch. His only complaint at this point in time was stomach pain and nausea.
By the end of March the pain and vomiting were becoming more frequent. Some days he would throw up after every single meal. Other days he was absolutely fine. We thought about his food choices and his activity level immediately following eating but we could not seem to make any sense of it. There was no rhyme or reason to the vomiting.
We made several trips to the general practitioner (GP) during these weeks. He kept chalking it up to a virus. But by the beginning of April Isaac was now vomiting 3-4 times per day every day. We began growing concerned and started to wonder if his symptoms were related to the HS. He certainly had many of the symptoms of HS caused gall stones. The GP did not share our concerns because Isaac’s bloodwork looked fine. He kept saying the word ‘virus’ and it made me more and more angry each time. We were not satisfied with this explanation, but because of the way the system is set up in the UK we could not get Isaac to a specialist without a GP referral.
By this time Isaac was missing a lot of school and the vomiting and stomach pain were persisting so we went back the GP for probably the 5th time that month. We saw a different GP and he agreed that an ultrasound of Ike’s abdomen would be prudent. To our dismay it came back completely clear. I say to our dismay because we were growing very concerned about our boy and very frustrated by the lack of answers. Life seemed to be on hold–he couldn’t go to school, we had to plan meals based on what would be least unappealing to regurgitate and it became hard to remember a time when Isaac wasn’t throwing up every single day, multiple times per day.
We were all fed up so Abe accompanied me to the GP again and this time we said we were not leaving without a referral to the hospital. He relented (but with the same breath said these words of infamy–”vomiting is really not a concern as long as he is staying hydrated”. I wish I was joking, but he actually spoke those words to which my sweet boy said, “what?!”). We left with a referral to the Paediatric Day Unit at the nearest hospital. The doctor we saw there was very kind and sympathetic but based on more bloodwork and the ultrasound scan he also didn’t feel it was related to the HS. He did, however, agree that the vomiting and pain were definitely a concern. We were sent home with a diagnosis of suspected acid reflux/gastritis and a hefty sized bottle of Ranitidine to hopefully alleviate the symptoms.
I felt emotionally torn after that afternoon in the hospital. My maternal instincts were pretty much screaming–this is not reflux. But then another part of me was thinking– “reflux is such a nice, tidy explanation for all of this” and “look, there is a drug for that!”. We can medicate him and all will be better. Life will return to normal and I was desperate for normal again.
It was around this time that we got word from my husband’s company that we would be repatriating over the summer. The timing of this news came right before the Easter holidays in the UK so went ahead with a planned trip to Somerset. After all of the stress of the last several weeks and knowing now that our time in England was indeed very short we whisked the boys off for a much needed break from reality.
To my utter surprise the reflux medicine seemed to work. Isaac went from vomiting daily back to maybe once or twice per week. We all breathed a collective sigh of relief.
Isaac went back to school and life became normal again. We dutifully gave him the Rantidine 3 times per day and we tried to help him make wise food choices by steering clear of really heavy, greasy foods.
But then as suddenly as it stopped, in late April the vomiting started again. This time it was accompanied by headaches, dizziness, and episodes of going pale and feeling faint. We saw another GP who was by far the most sympathetic and understanding. She shared our concern and gave us a referral to see a hematologist. We felt optimistic after that appointment despite the fact that the appointment was over a week away and Isaac was clearly very ill. And then the letter came. The letter stated that the hematologist had cancelled our appointment and rescheduled it for June 8th. To say we were devastated and FURIOUS doesn’t even begin to cover it. The GP from whom the referral had come suggested that we just go to the A&E (emergency room) at the hospital where the hematologist was located. This way the staff would be forced to admit us and we would gain quick access to the hematology department.
The next morning Abe took Isaac into the A&E. He was promptly admitted to the Paediatric Ward. The doctor who cared for him ordered more bloodwork and did a comprehensive physical exam, other than a slightly elevated billirubin Isaac looked “fine”. He didn’t see the need for Ike to be seen by the hematologist. However, the doctor was very concerned about the headaches in particular so he suggested that we do an MRI scan of Isaac’s brain before we discuss other options such as a GI scope. When Abe called to tell me this I was mad. Really mad. I was so sure that it had to be related to the HS that I thought the MRI scan would be a total waste of time. On Monday, May 7th our little trooper had his MRI procedure. We were not expecting a quick turn around on those results based on previous experience so we called back the next day to see about going ahead and scheduling the GI procedure while we wait. I was informed that my message would be relayed to the doctor and he would return my call shortly.
I hadn’t heard back by the afternoon school run so I went to collect the boys and stop by the GPs office to get copies of Isaac’s latest bloodwork. I left the boys in the car while I briefly ran in to pick up the packet from the receptionist. When I got back to the car Connor handed me the phone and said “it’s Dad”. “Honey, the doctor just called…the MRI results came back and something has shown up on it. He wants us in Newcastle right away.” My husband does not show strong emotion very often, but I could hear the fear in his shaky voice.
I know it sounds so cliche but really it felt as if the world stopped momentarily. I could only replay those words in my mind…”MRI….something has shown up….Newcastle right away”. I began crying which upset the 3 older boys because they knew something was wrong, but I just didn’t have the strength to put on my brave face for them. So the 5 of us cried together as I drove home to gather up overnight bags and get the other boys settled in with a friend who was going to come and stay with them. Connor– my precious, mature Connor –sat down on the couch with his arm around Isaac and comforted his brother. I called and left the most upsetting message for my parents, I was nearly hysterical by that point so I can only imagine how difficult it was to understand.
Abe came in as I was kneeling on the floor packing a bag. As soon as I saw him I sobbed “no,no, no! anything….anything but this”. He just held me.
We arrived at the Great North Children’s Hospital that evening and met with Dr. Hale. And she said the words that we had hoped we would not hear. Isaac’s MRI revealed a small but definite mass in the cerebellum of his brain. Those words hung in the air only briefly as she then followed up with, “as you have already guessed, in this line of work we would call it a tumor”. It felt suffocating in that room–so warm that it was stifling–and with each word that Dr. Hale spoke it felt harder to take a full, deep breath of air into my lungs. She prepared us to expect surgery within a few days and a long hospital stay and recovery. It was our worst nightmare and it had suddenly become our reality.
Cheerful Isaac remained oblivious. He was busy making friends with the nurses and other patients on the Paediatric Neurology Ward. It was something new and exciting for him. It was decided that Abe would go home for the night and come back early in the morning for the follow-up MRI and meeting with the neurosurgeon.
I felt physically ill. I could not stop kissing my sweet boy’s head and praying that he would not have to suffer–let me suffer, let Abe suffer, but please do not let my 8 year old boy suffer. Praying that this was all just a bad dream…a misunderstanding. I felt afraid. I felt despair. I felt alone.
As I settled onto the pullout sofa/chair I opened my Bible and God began bringing to mind passages of Scripture that I knew from memory:
He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress, my God, in whom I trust.”
will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress, my God, in whom I trust.”
(Psalm 91)
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
And there is nothing on earth that I desire besides you.
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever.
but God is the strength of my heart and my portion forever.
(Psalm 73:26)
fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
(Isaiah 41:10)
The Lord your God is in your midst,
a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.
a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.
(Zephaniah 3:17)
And we know that for those who love God all things work together for good, for those who are called according to his purpose.For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.
(Romans 8:28-30)
As I read over these familiar passages I began to weep as I saw them in a different light. Suddenly they seemed so very real, so personal, as if they had been written just for me. I felt bare, empty, exposed and vulnerable. Sitting there beside my child’s hospital bed I felt that every false sense of security, comfort, and gurantee that this world has to offer had been stripped away. We were sitting in one of the best hospitals in all of Europe and yet it could offer me no lasting hope or any sure guarantees that my boy would ever walk out of those doors healthy and whole.
I came to the place where I considered the possibility that Isaac would have to suffer. I had to consider the possibility that he may not leave healthy–he may have long-term effects from an invasive operation on his delicate brain. I had to consider radiation therapy and chemo. My mind, my imagination and my heart even had to consider that Isaac may die. And there, there in those deepest, darkest corners of possibilities I was flooded with peace– overwhelming, inexplicable peace. I didn’t have peace because I knew that God would heal Isaac or make everything better. (Nothing from the doctor’s report and opinion would have given that indication at this point either.) I had peace because I knew with all of my being and all of my heart that even if He did NOT–even if we had to eventually say good-bye to our precious Ikey– my faith would continue to believe that God is real, He is good, He is faithful, He love us with an everlasting love, He is preparing a place for us and one day He will return and take us to be with Him in glory. I felt complete assurance that I could trust Him with Isaac’s health and future in those darkest places–that no matter what the future held I would still be okay. We would still be okay. And Isaac would still be okay because God would still be God.
“Now faith is the assurance of things hoped for, the conviction of things not seen. “
(Hebrews 11:1)
To many that will sound like foolishness, but for our family that is the very foundation upon which we are basing our lives for we have discovered that it is the only foundation that will uphold us when all else crumbles. It is the very thing that sustained us amidst the dark, uncertainity and it is the very thing that gives us peace and hope as we navigate the unknown road ahead.
As many of you may already know, that unknown road ahead is filled with routine MRIs and close monitoring as we watch, wait and pray over the tumor. I will spare you the entire play by play of the week that Ike spent in the hospital at Newcastle and these subsquent months ( I have 5 kids and laundry is multiplying rapidly as I take the time to write even this much so….). But the short story is that the second MRI (this time with contrast dye injected into Isaac’s veins) that was conducted in the hospital in Newcastle revealed that the mass on Isaac’s cerebellum had very clear, defined edges so it is most likely a low-grade glioma non-malignant tumor. In the world of pediatric brain tumors this is great news. As long as Isaac continues to feel well and suffer no ill effects we can avoid any sort of invasive procedures on our sweet guy’s brain. We are now back in the States and he is under the care of an oncologist at St. Jude’s–again, great news and how blessed we are that there is an affiliate 20 minutes from our house!
So far all of the scans have shown no change or growth in the tumor. And the most incredible development of all is that Isaac’s symptoms have completely stopped. Just stopped. He occasionally has a headache or upset tummy but for now he is a happy, healthy 4th grader who, by the way, has already met his Accelerated Reading goal for the year of 100 points and has the highest record in all of 4th grade. To say that God has been gracious to our family would be the understatement of the century.
There is no medical explanation for why the symptoms would suddenly stop and not return for more than 5 months now. In fact, the doctors can’t even explain how a tumor of this size and location would have been causing Isaac’s symptoms in the first place. We spent 3 extra days in the hospital seeing GI doctors, hematologists, and neurologists. All of whom were completely stumped by Mr. Isaac.
So we have a non-malignant, slow-growing tumor caught early and now being monitored only because of these mystery symptoms that have now disappeared.
“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”
(Ephesians 3:20-21)
Yeah, needless to say, we don’t believe in coincidences.
To those of you who sent messages, cards, called us and most importantly prayed for us, thank you. Thank you so much. Our family is humbled and blessed by the love and concern that was shown for us. We felt very much carried to the feet of the Savior. God bless you. XOXO