Diary of Sydni Taylor
Timeline: JAN/05 - 2/1/05 - 2/2/05 - 2/3/05 - 2/4/05 - 2/5/05 - 2/6/05 - 2/7/05 - 2/8/05 - 2/9/05 - 2/10/05 - 2/11/05 - 2/12/05 - 2/13/05 - 2/14/05 - 2/15/05 - 2/16/05 - 2/17/05 - 2/18/05 - 2/19/05 - 2/20/05 - 2/21/05 - 2/22/05 - 2/23/05 - 2/24/05 - 2/25/05 - 2/26/05 - 2/27/05 - 2/28/05 - MAR/05 - APR/05 - MAY/05 - JUN/05 - JUL/05 - AUG/05
Dear Sydni,
As has become the norm these past few weeks, I dared blink and the day passed me by. I was fortunate in that Tari spent the entire day with some of her playmates; this afforded me essential down time in order to coordinate a semi-normal day. I actually worked for a few hours which felt delightfully therapeutic.
Today proved repetitive in that I spent about six total hours in the car; however, it stirred an awakening within. As I crept in traffic for a good portion of my back-and-forth commute, I observed widespread angst and hostility amongst the other drivers. All I could reflect upon was how so many people in actual fact do not get it. The discontent and despair in today’s society became noticeably visible. At that very moment I became aware of but one of the many gifts you have bestowed upon Mommy & I. We look at life from an atypical perspective now. And for that I am evermore grateful.
This afternoon, Mommy & I interviewed the staff at Spaulding Rehab. Whereas Oncology would like to begin chemotherapy within three weeks, all parties involved agree that, considering your progress to this point (your feeding tube is being removed today as well), you would be better served in OT & PT. This is your marathon training sweetheart – we need you stronger than strong. We will remain relentless in prayer while you continue to disregard statistics and improve daily.
My cousin, Kathy Matera, cared for you until Mommy & I returned. I couldn’t spend much time with you today as I had to pick up Tari by 5:00 PM. Accordingly, heaps of hugs and oodles of kisses to those pudgy, cuddly cheeks ensued. Driving home, I was over the moon amidst feelings of Faith, hope & love. On Angel’s Wings my little girl!
I love you!
Dad
Dear Sydni,
Last night and today you appeared to have difficulty receiving food from the bottle; however, your nurse feels it is simply a consequence of your relearning to suck, swallow and breathe. For example, this afternoon you were gulping your breast milk effortlessly as I bottle fed you. But then, near the end of your feeding, you began choking in a panic. It takes time to build a castle my little girl. Consider this: today is the tomorrow we worried about yesterday. You are doing just fine.
Overall, you look great. Your fontanel remains soft; although you are not getting a lot of volume from feeding, that can be expected when making an allowance for this being your first day without a feeding tube; we do have to monitor your stitch site, however. There is slight swelling which may require a pressure bandage should it enlarge. By the way, you weighed in at 13 lbs., 3 ounces today.
Daddy is awaiting the completion of your "history" disc so I can spring forward and meet with other noted Oncology Specialists (I am told I will have it tomorrow). My focus is in high gear; in spite of that, nearly all momentum is stalled until I have said information in hand. I am on it sweetheart.
Oncology has learned more about the miracle child in Italy who survived this type of tumor. The infant, at three months of age, went through four cycles of one chemotherapy combination, then four cycles of another combo. The second cycle entailed alternating between the two regiments. I will gather more specific details when I meet with Dr. Chi; the bottom line – the child went through eight months of chemotherapy and is presently three years in remission.
Regarding your chemo treatments, Oncology expanded on our tentative gameplan. You will be permitted a one month break between cycles I and II. Your second cycle will be much more rigorous than the first. Thus, you can anticipate a longer hospital stay. At that point, a stem cell transplant must be performed. But hear me out sweetheart: "Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence" (Helen Keller). My Hope for you is unyielding. My Faith in God is resolute. My Love for my precious girl is eternal.
You looked so inspiring today. It was the first moment in time since January 14th in which I saw you without any tubes. When you cried, I held you in my arms and you fell asleep almost instantaneously – much like you would when we were home. As you slept, I couldn’t help but stare at your innocent face and marvel at your strength. I have the butterflies one gets before a big series is to begin. We are but three weeks away. The opponent is cancer and the game is life. And while there's life, there's hope! On Angel’s Wings my sweetheart – On Angel’s Wings.
I love you!
Dad
Dear Sydni,
This morning’s menu was a mixed batter of delight and desolation. I awoke energized and eager for your move to Spaulding Rehab. I scurried about making breakfast for Tari, cleaning the house and skimming through my emails. However, my center of attention was quickly diverted as Tari beckoned me for the third or fourth time. When I finally stopped to take note – she was simply asking "daddy, please sit with me". Boom – like a ton of bricks I realized I was looking right through her. As I sat beside your sister on the couch, she nestled her head into my shoulder as we watched Wiggles together. Right away I understood her loneliness, feeling as though I had abandoned her every need. It crushed me. I didn’t leave her side for the next two hours.
As such, I missed being there for your discharge from Children’s Hospital. Mommy tells me the nurses were quite emotional during your departure. Eventually though, you and Mommy took an ambulance ride to Spaulding Rehab as the next leg of your journey begins.
As you arrived to open arms, your overall first day at Spaulding was about a C+. Occupational Therapy (OT) observed your feeding and identified a fundamental difficulty: keeping you calm. You tend to get excited during feeding, at which point you lose control. They noted you are still somewhat agitated with the bottle. Other issues taken notice of were (a) your head is still swollen – which may or may not be neurologically related, and (b) when you lie down, you tend to arch a lot. Thus, among other things, therapy will predominantly center on your eye movement, feeding and tone of body. Beginning tomorrow you will get on a regular schedule for the various therapies.
My time with you today was brief but well spent. You and I cuddled as Mommy decorated the room. Nevertheless, I could not stay long as I had to deliver your pathology disc to a friend at NEMC for our meeting tomorrow with an Oncology Specialist. After some prayers and a kiss goodnight, I was off to enjoy the colorful sights and sounds of Boston traffic.
My last stop was at Nana & Papa’s house where I found Tari snoozing comfortably. We stayed briefly before ultimately heading home. Along the drive your sister was insistent, stating "I miss Mommy & Sydni – we see them tomorrow Daddy"? It continued on and on after our arrival home, her sadness lasting longer than any point thus far since this tragedy befell our family. It seems, as hard as I try to shelter Tari from any trauma, I am bringing up the rear. My strength is in my throat as I watch your sister’s heart breaking. Her confusion is painful to witness. "The eye sees only what the mind is prepared to comprehend" (Henri Bergson). I pray for God’s help..
"The only limit to our realization of tomorrow will be our doubts of today" (Franklin Roosevelt). Bumps-in-the-road aside, we must find it within to remain strong. Faith shall be my crutch. On Angel’s Wings Sydni – On Angel’s Wings!
Dad
Dear Sydni,
Another day, another "how is it 7:00 AM (February 5th) already"?! I have yet to go to bed. The past twenty-four hours have presented fresh twists to an already unsympathetic plot. Yet at the end of the day there remain two constants: (1) your future is uncertain and (2) my love for this family is unending. "The question is not what you look at, but what you see" (Henry David Thoreau).
Last night (Thursday) Tari was inconsolable. Sleep was periodic until 5:00 AM as her emotions begged reassurance. All I could do was hold her upon me until first light. As your sister lay in my arms, I caressed her forehead while asserting to be more than I have been. Should it entail every minute of my attention – done. If that means discontinuing my unsuccessful attempts to work a few hours each day, so be it. Counseling? I’ll look for the phone number. More prayer? I’m praying as I type. My family is collapsing before my very eyes and it is time not to wallow in self pity but rather fight back with every ounce of my being. "Your profession is not what brings home your paycheck. Your profession is what you were put on earth to do. With such passion and such intensity that it becomes spiritual in calling" (Vincent Van Gogh).
Today Mommy came home and spent the entire day with Tari. Your sister’s smile was beyond description. But the irony was – within thirty minutes of Mommy’s arrival - Tari fell fast asleep (in a sitting position no less). As wound up as she was to see Mommy, I suppose the deeper issue was that she felt safe and secure with Mommy & Daddy home – thus allowing her to nod off so effortlessly. Unfortunately, Tari was also sporting a 102 degree temperature; thus your sister’s plans to visit with you today have been temporarily put on hold.
This afternoon I met with noted Oncologist Dr. Cynthia Kretschmar. It was an insightful and highly educational meeting. Your diagnosis was incontestable – that was not the point of today’s meeting. Rather, I learned (among other things) a tremendous amount about chemotherapy protocol, stem cell transplants and various medicines to be considered in the aggressive treatment of your rare tumor. Dr. Kretschmar is one of three renowned specialists in the country that actually writes the protocol for the chemotherapy being considered for you – thus my tutorial came from the highest authority. By the way, a little sidebar information: your tumor is more common in Asia than in the States.
After your next scan, I will revisit with Dr. Kretschmar; as well, I may fly to New York and California to meet with her counterparts in person. If (at that time) there is any question whether the tumor is out, then I will insist upon a second opinion. It must be crystal-clear that the time is right to embark on aggressive chemotherapy. If I identified with anything from today’s meeting, it was (a) stick to my gut and (b) Mommy & I must (and will) be your biggest advocates.
Post meeting, I ventured over to Spaulding Rehab for some quality time with my girl. I am told you had a challenging day. You are having difficulty keeping your food down. Nurse Alyssa told me that, should you vomit one more time, it is back to Children’s Hospital for closer neurological monitoring. Stay strong honey – we need you physically resilient for the chemotherapy.
I finally arrived home to trade places with Mommy. She and Tari had a great day together. Mommy was quite emotional and understandably did not want to leave – but she also was chomping at the bit to be by your side. Whilst Tari slept on the couch, Mommy gently kissed her cheek before driving back to continue her bedside vigil. "Only a life lived for others is worth living" (Albert Einstein).
On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Darkness bowed to daylight all too quickly this morning as Tari was battling an upset tummy and 103 degree fever. But your Aunt Paula, despite a backed up workload, was good enough to come to Daddy’s rescue. She drove to our home and took your sister to the doctor’s office as I tried to catch up on anything & everything. "No act of kindness, no matter how small, is ever wasted" (Aesop).
Grandma stayed with you this afternoon while Mommy drove home to spend time with Tari. Of course, as has been the norm these past two days, Tari decided to take her nap during Mommy’s visit. Daddy desperately needs to figure out Mommy’s system! Anyhow, I worked for two solid hours before Tari awoke. Nevertheless, luck was not my lady today as Tari’s memory apparently is sharp as a tack. Her first words to Mommy were "Daddy is taking me to the store to buy stickers" (I had promised this to your sister at 5:00 AM this morning as an inducement to make her fall asleep). "My schedule is too busy – absolutely no way" I thought (segue to minutes later)………………..
For the first time since January 14th Barney & CJ came home. Despite the time-consuming ramifications, Mommy & I have decided the dogs should stay with us. With a bit of luck this will restore an element of normalcy into Tari’s abruptly altered life. Barney & CJ’s emotional trauma? They demanded a mere five seconds before settling back in.
As for you, (overall) today was a good day until just moments ago. Unfortunately the vomiting has come back. Up first was your dinner feeding, shortly followed by your Phenobarbital. At this instant a tube is being place down your nose and into the stomach in order to administer the Phenobarbital (although, the tube will be removed immediately thereafter). Whereas you had been eating well for the past twenty-four hours, the staff is giving you a free pass for tonight only. Irregular burping aside, the nurses believe this may be an acid reflux. Honey, your stomach has to tolerate these feedings else we are in deep trouble. Tonight I will pray for one small step. "If you add a little to a little, and then do it again, soon that little shall be much" (Hesiod).
This evening Mommy is by your side and Tari is slumbering at Nana & Papa’s house. I am alone with Barney & CJ – and I have never been more thrilled at the prospect of sleep. Although I did not see you today, you have been and will be in my every thought and dream. In the meantime, remember this: "Out of difficulties grow miracles" (Jean De La Bruyere).
"Rise above the storm and you will find the sunshine" (Mario Fernandez).
On Angel’s Wing my sweetheart – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Today embraced such a range of emotions; yet even those negative in appearance were inspirational in actuality. This morning was a prime example. In that I am running this year’s Boston Marathon in honor of your extraordinary courage and will to live, and whereas present circumstances will not allow me to train during the week, at the very least it is essential I complete one long distance training run per week. As such, this morning I labored through 16.5 miles with the L Street Running Club. My first 11 miles intermixed energy with tears (but only because I repeatedly envisioned hundreds of friends lining the course cheering you on). Then, at the Mile 11 water stop, a precious little girl was sitting on the back of her parents’ SUV while they tended to the runners. This child was so innocent and beautiful – it reminded me of what dreams may come for you. I could not hold back my emotions - thus crying over the remainder of the course. Still, amidst the tears I was filled with an overwhelming joy that I cannot put in plain words.
Post run, I hurried over to Nana & Papa’s house to kiss Tari before Aunt Paula sped her off to a birthday party. After squeezing in as many hugs and kisses as your sister would allow in a fifteen minute span, I then came to visit you at Spaulding. And oh how beautiful you looked today!
Mommy has the room so delightfully adorned. Lined high above your bed is a string of Novena cards sent as a gift by the children of our dear friends in Maryland; the wall in front of you is literally covered with all of the prayers and well wishes posted by family, friends and strangers who have visited your website; and an atmosphere of warmth and love surrounds your heart. When I entered the room, you were somewhat uncomfortable and in pain; as such, I lifted you in my arms and within minutes you and I were fast asleep for the next hour.
Earlier in the day, OT came and fed you – and it was a tough feed. You showed an inefficiency with your sucking and swallowing. OT believes you are getting extra air and this is throwing you off. Burping (or lack thereof) has been a major concern. Your doctor paid a visit and, as a result of recent setbacks, is considering plenty of changes to address whether this is acid reflux or neurologically related. To resolve this they will modify your food and meds. As well, to compensate for fluids lost relating to your vomiting, nurses have adjusted your IV amounts. At this point, they are going on the assumption that this is reflux. Another possible explanation is that you are now taking your seizure medicine (Phenobarbital) orally. Whereas it tastes so dreadful, your tummy might be upset. "Problems are not stop signs, they are guidelines" (Robert Schuller). You are in excellent hands at Spaulding Rehab – we will work through this sweetheart.
On a positive note, you have been looking straight at Mommy & I quite a bit; your smile is occurring with more frequency; and when your arms were shifted to the center of your chest, this made your head & legs move – a positive sign.
My "goose bump" moment of the day transpired while chatting with my best friend in Sweden. To quote: "You can never give up on a baby who is fighting so hard. She is telling you "I am going to survive"" (Shjon Podein). We will never give up on our Faith & hope!
My day ended with some much needed laughs & smiles. For 3+ weeks now I have not been out in any social environment; consequently, I went to The Greatest Bar for a few hours to be amongst friends as I watched the New England Patriots beat the Philadelphia Eagles in winning their third Super Bowl in four years. It felt so good to laugh and share hugs with my buddies. "The best things in life aren't things" (Art Buchwald). We toasted to your fighting spirit and a healthy recovery before I ventured home.
On Angel’s Wing my baby – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
I don’t recall when exactly the morning began and the day ended today. I awoke at 6:00 AM and next thing I knew I was driving to Spaulding Rehab at 6:00 PM. This situation has either become exceedingly overwhelming or Daddy is going cuckoo.
At any rate, Mommy came home today to play with Tari while Aunt Janet sat by your bedside. Your sister placed a band-aid on both Barney & CJ before the four of them set off to the park for the afternoon. Your sister was her old self as she frolicked and laughed about. And of course, Mommy surely knew Tari was herself again when she refused to leave the park!
By late afternoon Mommy & Tari visited with you while I stayed home with the pups. Before long I would follow as I just had to kiss my girl goodnight! Upon my arrival, Mommy & Tari were building a castle while Nurse Theresa walked the aisles trying to calm you. Tari was not in the best of moods by this time. I want to believe she was simply tired; however, it is more consistent with a pattern of mood swings that has been upsetting me for the past two weeks. Your sister is so, so sad about this sudden disruption in her life. I am desperately trying to reaffirm to her that this is not somehow her fault. Whenever I do not come and visit you, please know it is because I am spending extra time with Tari. I love you both so dearly – I am fraught while making an effort to keep this family together but I will never give up. “You make a living by what you get, but you make a life by what you give” (Unknown Author).
This evening, while Mommy and Aunt Janet took Tari to dinner, I stayed with you while Nurse Stefanie tried to wheedle out a few burps. You were quite stressed so Nurse Stef suggested I try and calm you down. As I held you in my arms and pressed your head to my heart, you fell fast asleep. I thought “I don’t ever want to let go”!
I would not categorize today as one of your best. Your fontanelle is still soft – but fuller. There could be a number of explanations – some negative yet others positive. We will learn more tomorrow upon further consultation with Dr. Madsen. Still, the most significant concern is your inability to burp. The end result of this reflux issue is enormous! Your therapists are theorizing that acid is coming up your esophagus which is thereby causing great discomfort. I pray it is this and not some neurological setback. “What lies behind us and what lies before us are small matters compared to what lies within us” (Ralph Waldo Emerson). You have a great strength within. I believe in you Sydni – I believe!
“Ask not what tomorrow may bring, but count as blessing every day that fate allows you” (Horace). This is yet another gift you have bestowed upon Daddy. In spite of my worries for your survival – regardless of the emotional trauma presently constituting my every waking hour - I get out of bed each day with an invigorated appreciation for life. These are not mere words – I sincerely cherish God’s great gift. Thank you for opening my eyes to the true value of love, hope, family and Faith.
On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Daddy’s morning was set in motion by “Daddy, I need you. Come here”! I apparently did not tip-toe softly enough as my attempt at early computer time went for naught. Tari 1, Daddy 0. Next up – breakfast: I allowed your sister to fill Barney & CJ’s doggy bowls as I prepared (for her) a spread of blueberries, bananas and cereal. But before I could say “what the……”, I found Tari sitting on the floor tossing cheese-its to CJ. Tari 2, Daddy 0. Finally, I was able to settle your sister down with some paper and two sleeves of stickers. Twenty sleeves later: Tari 3, Daddy 0.
Mommy tells me you started your day shaping tons of smiles with those pudgy cheeks. Mommy was quite sad last night after your numerous vomiting episodes; but she knew everything would be alright after watching your face shine this morning.
Chaplain Eileen (Kerry, Ireland) of MGH paid a visit for the first time this morning. She told Mommy that, upon walking into your room, a tremendous atmosphere of love from friends, family and Mommy & Daddy instantly warmed her heart. Beyond a doubt she declared belief that you will be a miracle child and that God is watching over you. Chaplain Eileen was so excited about your room – she actually told Mommy “thank you for strengthening my Faith”!
By the way, through your loving sitter Michele Meaney, Mommy is coordinating a blood drive amongst family & friends. The blood will be donated in your name to the Children’s Hospital. At this early juncture, it is but one small way that we can say thank you by helping others in need.
Daddy’s day was fixated on one sizeable detail – performing as much due diligence on your tumor and subsequent chemo treatments as my time would allow. “Perseverance is a great element of success. If you knock long enough and loud enough at the gate, you are sure to wake up somebody” (Henry Wadsworth Longfellow). I will not rest until I exhaust every avenue at my disposal.
This afternoon Mommy and I met with Dr. Madsen. We were very nervous as both of us believed your fluid build-up would necessitate a shunt. However, Dr. Madsen noted the ultrasound (taken this afternoon) doesn’t look bad. Your ventricles are still big – and fluid is surrounding the outside of your brain. But these negatives did not alarm Dr. Madsen. To be honest, your recent struggles with feeding aside, he felt you looked great. Your fontanelle appears good; your incision looks great; and although your blood clot doesn’t look much different, that was not concerning to him either. He suggested another MRI be taken in a couple of weeks (although Daddy would like one sooner).
Tomorrow, on the other hand, will most definitely be a more stressful day. Mommy & I are to meet with Dana Farber and the Oncologists. Your rare cancer will be the foremost topic of discussion, as will any & all preliminary thoughts on a chemo protocol. Daddy has lots of questions so I hope they are prepared.
Tonight Mommy observed you may have experienced a slight seizure (lasting about five seconds) while she waited for an ambulance to bring you back to Spaulding Rehab. She spoke to the staff and it will be addressed tomorrow with the doctor. Your day ended with you being a bit tired and cranky. I could hear you crying over the phone and I just wanted to reach through and hold you. “To ease another's heartache is to forget one's own” (Abraham Lincoln). Rest well tonight my precious little girl.
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Mental exhaustion can best describe how Daddy’s entire day played out. It all began at 3:00 AM this morning when your sister awoke. Tari was terribly upset for about an hour before settling down upon our relocation to the couch. As I noticed her nodding off, she said "Night-night Daddy". But I was utterly distraught at what she muttered next – unprovoked and on her own: "God Bless Sydni. Please make her get better and come home soon". Tari should be dreaming of Wiggles and Clifford and Blue’s Clues. Instead she wakes nightly to anguish and sorrow. Your sister must be so frustrated, frightened and confused. Dear God I call for help – please strengthen me so I may better care for Tari’s needs.
Tari stayed with a friend today as me, you and Mommy spent the entire afternoon meeting with our team at The Dana Farber Cancer Institute. Your sister placed Blue’s Clues band-aids on Daddy’s pants for your boo-boos. And as misfortune would have it – they were needed as you experienced a seizure right before my eyes in the waiting room. Mommy called for the neurosurgeon as I stayed by your side. Your seizure was short-lived but scary nonetheless.
The middle part of our day was more composed. After moving to a private area, Mommy tickled your chin as I prepared for our meeting with Dr. Chi of Oncology. In the meantime, we had lasting and informative visits with PT and Neurology. Mommy chatted at length with Nicole (your neurologist) – mostly respecting your seizure meds but also covering all other salient concerns. Then the waiting game began as our center of attention would shift to the upcoming conference with Oncology.
This meeting would last approximately two hours. Its’ tone was quite business-like as I came prepared with an overabundance of questions resultant from my due diligence over the past week. Although Dr. Chi stated things looked as stable as they were last week, she was quick to point out that it is impossible to predict what your future holds neurologically. I was not pleased to learn of Dr. Chi’s intent to wait until just prior to the start of chemotherapy before giving you another MRI (defined as the next couple of weeks).
Acknowledging that you are clearly one of Children’s Hospital’s youngest cancer patients, Dr. Chi was unsure if a port-a-cath is too big for you. Nevertheless, they will attempt to do both the port-a-cath and spinal tap at the same time. Among the many other areas under discussion today:
- A bone marrow biopsy will be performed from your hip to ensure no tumor cells are present;
- Higher dose chemotherapy is the game plan. As well, a stem cell transplant is most definitely on their agenda (to be acted upon seven months into your chemotherapy). They would destroy your bone marrow and regenerate it with your own stem cells. Dr. Chi could not cite me any examples when I asked whether this has been proven to work;
- You will go through 4-6 cycles of chemo; and then every 2-3 months an MRI will be performed;
- Dr. Chi wants to employ the Head Start Two protocol for your chemotherapy – and would like to begin in 2-3 weeks;
The list goes on-and-on-and-on-and-on but the bottom line was – Dr. Chi noted she cannot promise us anything. Mommy & Daddy understand the grim prognosis honey; on the other hand, we truly believe you shall overcome. I hope I am wrong but one observable detail in particular made me think Oncology just might be looking at you as a research statistic rather than a child fighting to beat this rare cancer. Dr. Chi never once touched or held you during our lengthy meeting today. As a matter of fact, she has never examined you period. Oh honey, Mommy & Daddy have some demanding decisions to make – and the clock is ticking but fast. "Doubt is the vestibule through which all must pass before they can enter into the temple of wisdom" (Colton).
Afterwards, Mommy & I compared notes, shared our thoughts and then you were off in the ambulance and back to Spaulding Rehab. On the home front, your sister (who was at first going to sleep over at Nana & Papa’s house tonight) became quite unhappy so Aunt Paula drove her home. Tari and I made popcorn, watched the Wizard of Oz and she soon fell fast asleep.
May God give us the strength and wisdom to make the right decisions on your behalf Sydni. "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference" (Serenity Prayer).
On Angel’s Wings sweetheart – On Angel’s Wings!
I love you! OH, I so love you very much!!
Dad
Dear Sydni,
I awoke this morning stronger than strong, more convicted in my Faith and unwavering in what my gut was telling me. Yesterday’s disheartening meeting with Oncology only strengthened my resolve. You don't drown by falling in the water. You drown by staying there. With that, Mommy and I came to a decision which we never dreamed would cross our minds – we are parting ways with your Oncology team at the Dana Farber Cancer Institute. We have a solid game plan and are finalizing details today. But rest assured, we are not settling. You will be with the best in the country. "What we anticipate seldom occurs, what we least expected generally happens" (Benjamin Disraeli).
With this renewed single-mindedness, today displayed an upbeat tone. Your Aunt Paula picked up Tari in the morning so I could work a few hours. Mommy came home and spent the afternoon with your sister. Daddy even found time to jog six miles. That was such a treat! Today is also Barney & CJ’s 11th birthday so tonight Tari & I are planning a special party.
I did not see you until dinner time but your day echoed today’s positive emotion. You experienced but one vomiting episode this morning. Other than that it was all good today. You ate well, napped well, burped well and smiled like a champion. After a family photo in the playroom, Tari and I wrestled on the beanbag chairs while Mommy cuddled you in her arms. Everything about today was uplifting. And then, just before I was to leave, my friend Jaime delivered Valentine’s Day cards written just for you by his entire third grade class. The drawings by all the children were so beautiful – their message of hope lifted my spirits even higher.
At 8:30 PM, Tari and I ultimately departed so we could spend some quality time with the birthday dogs.
Sweetheart, out of weakness comes strength. From despair comes hope. "Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" (James Buckham). Mommy & I shall follow our hearts with the help of God and prayer.
On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Daddy’s morning was dedicated to preparation and concentration while your sister went to play with a friend. Today Mommy and I would meet with Dr. Cynthia Kretschmar of The Floating Hospital for Children at New England Medical Center. Dr. Kretschmar is a brilliant Oncologist and one of only three specialists in the country who actually writes the protocol for rare germ cell tumors of the brain (such as yours). Dr. Kretschmar has direct, immediate access to some of the most extraordinary minds in the country, if not the world, on rare brain tumors. As such, your mother and I are following our hearts and placing you in the care of this gifted doctor of medicine. Mommy and I absolutely adore Children’s Hospital and will continue to maintain a relationship with your neurosurgeon, Dr. Madsen. And our hearts will never leave the talented & caring nurses at Children’s Hospital who love you so. We are simply calling in a Hall of Fame quarterback to run the offense.
Our meeting with Dr. Kretschmar was both educational and uplifting. After discussing a range of scenarios moving forward, we established a game plan and now it’s time to go to work. "Achieving starts with believing" (Unknown Author).
On a sidebar note: I couldn’t help but attach importance to today’s irony. Back in December (04’), well before Mommy & I knew of your cancer, my buddy LB and I decided to run this year’s Boston Marathon for two worthy causes – the A-T Children’s Project and the Cam Neely Foundation. Then today, a nurse (at NEMC) and dear friend, Cathy Downing, told Daddy we would be put in touch with The Neely House during your chemotherapy treatments. The Neely House at Tufts-New England Medical Center is a bed and breakfast style home away from home for cancer patients and their families. It was created to fill an important need - to help pediatric and adult cancer patients and their families while undergoing treatment. The house is an environment in which families who stay there can talk with others in similar situations while being near loved ones in a warm, home-like setting. Even back in December, God was preparing me by guiding my heart in the direction of NEMC and Dr. Kretschmar. "What's meant to be will find a way" (Unknown Author).
Our biggest goals for you today were: encouraging you to move your head from side-to-side; having your hands touch each other so you can get to learn about yourself; keeping your head centered and your body straight; and raising your awareness of your body parts by moving your legs and hands (so that, when they are ready to move on their own, your muscles are exercised accordingly). PT had comfortable new braces made for your thumbs today – a pretty blue color. Your foremost challenge today was that you threw up your 3:00 PM & 6:00 PM feedings. But overall, you’re doing well.
Our scare for today arose when it was learned CJ is having heart problems. She will be admitted to Angell Memorial Hospital on Monday for more intensive examination. But she is resting comfortably at home tonight.
Tonight I asked Tari if she wanted to start our bedtime prayer and she said "God, please bless Sydni and make my best friend better". Be strong my angel! Our prayers will not fade – we will be by your side every step of the way. On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Today was a rather peculiar day that can best be described as organized chaos. Tari was very much in need this morning so we drove to the store at 8:30 AM to buy (of course) stickers. But after such urgency, upon our return she calmly sat and we enjoyed tangerines, peanut butter crackers and a cheese stick for breakfast. Aunt Paula took Tari to a birthday party at 1:00 PM which afforded me a great deal yet little time to accomplish anything. This evening our baby-sitting plans imploded at the last minute yet prevailed instantaneously with a called audible. Mommy & I clashed by way of a hale and hearty, stress-related argument that dissolved as fast as it began. I think I stepped into the Bizarro World today. "Reality is merely an illusion, albeit a very persistent one" (Albert Einstein).
I absorbed myself in reflection concerning Tari this afternoon and have come to the conclusion that, to better understand your sister’s emotional trauma, I must track down a first-class play therapist. Tari has always been steadfastly independent. To an extent – she still is. Yet very nearly every time I am present, she now asks that I hold her. As well, I have heard her pronounce one too many times "Daddy, come here, I need you". The finishing heartbreaker has been her steady complaining of a tummy ache, followed by "you take me to the doctor"? Of course, when I stop to play with her, the bellyache ceases to exist. It looks as if she sees the constant concentration toward you, rationalizes "if my tummy hurts, maybe I’ll be the center of attention" and, hence, the mimicking of a boo-boo. Your sister is trying to communicate what she is feeling. She doesn’t comprehend the outcome of what has happened. It is time to nip this in the bud. "A journey of a thousand miles must begin with a single step" (Chinese Proverb).
This evening Mommy & I went out together for the first time since January 14th. We attended a fundraiser for the A-T Children’s Project. How comforting it was being amongst so many wonderful people. Most of our evening was spent chatting with our friend Brad (Margus: founder of A-TCP). Brad’s relationship with St. Jude’s Children’s Research Hospital was a most interesting topic of discussion.
Nevertheless, your mother and I stayed only two hours before returning to Spaulding Rehab. You were not having a good (feeding) night which pretty much echoed your entire day. Good friends Dave & Nancy Worthley were by your side while we attended the function. I stayed for no more than fifteen minutes as you slept so innocently in your crib. After a few prayers and many kisses goodnight, I was off. May you live all the days of your life my angel!
On Angel’s Wings sweetheart – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Toward the end of my day, I began contemplating what to write in today’s diary. I was quite confident in my thoughts; until – 10:30 PM. That is when I received the call from Mommy that you will require emergency brain surgery to relieve pressure resultant from fluid build-up which has subsequently enlarged your ventricles. You were particularly lethargic this afternoon and, when factoring in your recent vomiting, red flags were quick to rise. As such, you were rushed to Children’s Hospital for a CT which confirmed the finding.
Mommy was insistent that Children’s Hospital track down Dr. Madsen to perform the operation. After all, he did save your life the first time and knows the inside of your head better than anyone. Your mother’s inflexibility was worked out as Dr. Madsen was located and made available for surgery in the morning. The operation will involve the placement of a permanent shunt. Now, many people with shunts live long, productive lives – including some professional athletes. However, whereas blood loss is a primary concern with any brain surgery and, calling to mind your massive hemorrhaging the first time, needless to say Mommy & I are quite apprehensive. Nevertheless, we will remain strong in our Faith as your mother & I ask all of your supporters from far and wide to join us in prayer throughout the day tomorrow (2/14). "Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence" (Helen Keller).
This evening’s setback sharply parallels how I originally intended to begin today’s diary. My morning started with a 17.6 mile training run over a course notorious for its hills. Several were somewhat challenging – others exceptionally grueling. Added to the mix was an extreme day of shifting weather. The morning climate hovered comfortably around 30 degrees; within an hour abruptly dropped to a chill; out of the blue snow squalls and strong head winds would follow; only to be greeted afterward by sunshine and a pleasant finish. When attacking each respective hill, my legs would burn as I pumped my arms and huffed mightily. In spite of this, upon reaching the top each time, my breathing neutralized and I felt resilient.
Each easy stretch of run was reminiscent of your good days; when faced with the challenge of a hill, it struck a chord suggestive of your intermittent struggles; sudden weather changes evoked comparisons of bad days only to be finished on a high. This rationalization offered that obstacles are indeed likely along your hopeful road to recovery. The goal at the end of each day is to reach the top of that hill. "It's easier to go down a hill than up it but the view is much better at the top" (Henry Ward Beecher). I have Faith that today’s setback is merely a hurdle. At 2:00 AM Mommy told me you were resting comfortably. Sleep well and be strong for tomorrow’s hill!
Tonight Daddy’s friend Shawn Sullivan was kind enough to offer me and Tari courtside seats for a much needed "fun night out" at the Boston Celtics game. Your sister and I did not stop laughing all evening. Tari snacked on popcorn and french fries; intently watched pregame warm-ups from her seat; danced courtside at halftime; and cuddled with Daddy in between. For a momentary part of my day, I was able to forget about the worries of our reality and simply be a dad having fun with his daughter.
Tomorrow is a big day sweetheart. Be courageous. "Hard things are put in our way, not to stop us, but to call out our courage and strength" (Unknown Author). Be inspiring. "There never was a great soul that did not have some divine inspiration" (Marcus T. Cicero). Be a conqueror. "What seems impossible one minute becomes, through faith, possible the next" (Norman Vincent Peale). We will be by your side in prayer every second of your day.
On Angel’s Wings Sydni, On Angel’s Wings!
I love you!
Dad
February 14Dear Sydni,
You did it! God took notice of the innumerable petitions from around the world. You are today where prayer has brought you; you will be tomorrow where prayer takes you. On this day your resolve to live reminded Daddy that life is not a right but a gift. I’ll tell you a little secret as well – I knew you would pull through. “We walk by faith, not by sight” (2 Corinthians 5:7).
This afternoon I arrived at Children’s Hospital to find you slumbering away in your 9 North bed. And why not! Time was proving to be our chief rival with the operating room being booked solid. As the hours passed, you eventually found your way into the warmth of Mommy’s arms while I spent some time on the computer. Thus was the outline of our entire afternoon – hurry up and wait.
Your turn finally showed its face at the end of the day. After nearly twenty-four hours of waiting, it happened that fast. Mommy and Nurse Stacy rolled your bed onto the elevator, exited at the third floor and carted you down the hallway to pre-op, I signed the consent forms, believe-it-or-not many laughs ensued, and then it was time for your second brain surgery in four weeks – on this your three month birthday (Mommy and I made the doctors promise they would sing happy birthday in the OR before they began). The mood was focused when Mommy & I were asked questions about your history – yet light and cheerful as we made conversation with the OR doctors. “When you believe in a thing, believe in it all the way, implicitly and unquestionably” (Walt Disney).
Surgery lasted about an hour. Even though teams were on standby lest you be subjected to hemorrhaging again, no one was needed as you were strong and sturdy throughout. A permanent shunt was placed within your brain which will act as a drain pipe so to speak. Notwithstanding future obstacles, this should allow the CSF to flow freely and alleviate cranial pressure. Post-op, you appeared somewhat uncomfortable – yet opened your eyes as soon as you heard Mommy & Daddy’s voices. Your mother and I just marveled at your toughness. “It's hard to beat a person who never gives up” (Babe Ruth).
You made it through the hills today sweetheart – well done! On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
February 15thDear Sydni,
I was not able to see you at all today. The physical and mental exhaustion of this life-vs-death voyage at long last caught up as, upon awakening this morning, I was dizzy, weak and nauseous. Literally, I actually could not arise out of bed until 5:00 PM this afternoon. Poor Barney & CJ were fed breakfast at 3:00 PM – and given their first walk at 5:30 PM. It was a stretched and tiring day for Daddy!
Tari visited you and Mommy at the hospital for the entire day – and it sounds like they had tons of fun. Of particular reference was in the family playroom while Tari was playing with some puzzle blocks. Rather than putting the blocks together in its proposed puzzle formation, she instead made the shape of a cross and called it her castle. Thus, the glow of one warm thought shined through the purity and innocence of your sister. God is telling Mommy and Daddy he hears our cries.
Considering it has been less than twenty-four hours since your second brain surgery, you are responding reasonably well. Your head is fairly swollen but a CT scan revealed no critical issues re the placement of the shunt. Your shunt is programmable in that the pressure can be changed with a magnet in order to monitor the draining. Being a foreign instrument in your body, presently you are proactively on antibiotics to help fight potential infections relating to its installment. I was very pleased to learn that you have been feeding remarkably well – no vomiting at all. In my heart I am hopeful that the shunt was a necessary procedure in facilitating recovery. At the present, you are being monitored for seizures. Spaulding Rehab is still holding your room – so once your feeding is stable and you are moving around, we can refocus on the ultimate target which is chemotherapy.
By the way, for the first time last night I looked at your original scan which depicted the size and shape of your tumor. My breath was taken away as I staggered to compose myself. I am forever indebted to the doctors at Children’s Hospital. They are truly in God’s grace!
As long lasting as this journey appears, let Faith be our guide. "Everything comes gradually and at its appointed hour" (Ovid).
On Angel’s Wings Sydni, On Angel’s Wings!
I love you!
Dad
Dear Sydni,
At this early stage I am guardedly optimistic with the results of Monday’s surgery. The goal today was to raise your head regularly and at various angles in order to establish whether or not your brain can handle the pressure. In addition, it does appear you have experienced slight seizure activity; as such, you will remain hooked up to an EEG for continuous monitoring.
Among the other central interests today: we are awaiting the results of your GFR test – which will verify your kidneys' abilities to withstand chemotherapy; physical therapy carried out a host of stretching exercises with you in the afternoon; & the dietician is focused on your intake of additional calories during the day – and feeding you via the tube at night so you can sleep and still gain weight. By the way, you weighed in today at 6.4 kilograms (14.11 pounds). In other words, you have gained almost one pound since Monday. Considering you did not gain any weight in the past two weeks…………let’s just say Daddy is in good spirits after catching sight of a step forward, that which we have not seen in some time. "This is the day that the Lord has made. Let us rejoice and be glad in it" (Psalms).
Regarding Mommy & I choosing to bring in a top-of-the-line specialist who shall orchestrate your chemotherapy treatments, said decision does not come without baggage. In consequence, this afternoon your mother & I began the delicate task of strategizing how exactly we plan on functioning through the bureaucracy as we encourage two separated hospitals to act as one. In truth, we are relying on each side to disregard their own policy & protocol as we pull out all the stops to save your life. This challenge appears as monumental second only to your becoming but the third miracle child in the world in relation to conquering this rare brain cancer. Mommy & I will do whatever it takes. "The achievement of your goal is assured the moment you commit yourself to it" (Mack R. Douglas).
This evening before my visit, Mommy, Tari & I halfheartedly enjoyed a family dinner together at Bertucci’s (you were not with us thus the picture was half complete). After that, while Tari and Mommy shared some quality time in the playroom, I stood by your side whilst singing songs and telling you about my day. My God you looked so beautiful this evening. And as I spoke, you wrapped your tiny hand around my finger and squeezed ever so tightly – as if to say "hang in there Dad". I will sweetheart – I will. No life ever grows great until it is focused, dedicated and disciplined. "Look and you will find it - what is unsought will go undetected" (Sophocles). I will keep the focus.
Our evening ended with an unpleasant feel as Tari’s contentment turned to aggression the moment we tried to leave. Your sister is so confused and hurt. As I sit here tonight, I find myself overjoyed by your courage and soul while, at the same time, dejected in the wake of Tari’s sadness. This evening I pray for God’s guidance. "If God brings you to it, He will bring you through it" (Unknown Author).
On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Today was transitory in tone as we awaited your transfer orders back to Spaulding Rehab. Whereas your exact discharge time was open-ended, I decided to spend the whole day with your sister. Recognizing that presence is more than just being there, I provided Tari with 150% of my attention from the moment she arose until bedtime. It is of no coincidence that today was the happiest I have seen her in weeks. “Talk not of wasted affection; affection never was wasted”(Henry Wadsworth Longfellow).
As such, Tari & I played with stickers all morning while intermittently watching Dragon Tales and Clifford; we shared laughs over a hearty lunch of pasta and grated cheese; in the afternoon I took your sister to a viewing of “Pooh’s Heffalump Movie” (we cuddled in the seats as she ate popcorn and sipped from her diet coke); Tari was so excited after the movie that all she kept repeating was “we do again Daddy?”; shortly thereafter, I found myself driving around for two hours as Tari napped in the car; and then dinner, making bubbles and watching “A Bug’s Life” was our evening carte du jour. “The greatest possession we have costs nothing, it's known as love”(Brian Jett).
The best part of Tari’s day was when Mommy came home to spend the night. Your Mommy has not left the hospital since January 14th. Beyond a doubt her body was shutting down; thus, our dear friend Tanis gave Mommy a much needed reprieve from her bedside vigil. Upon arriving home your mother was utterly exhausted and, as a consequence, went near directly to bed. Nonetheless, Tari had such a smile of security on her face. As a matter of fact, this is the first time since January 14th that Tari asked to sleep all alone in her “big girl bed”! Happenstance? I think not.
Your day was somewhat neutral – which I regard as a positive. Neurology evaluated your EEG readings and noted you are not enduring seizure activity but rather “spikes” (which are to be expected). However, the spikes are stirring in the left frontal region of your brain – which is precisely where brain damage has occurred – so we shall keep a close eye on all such activity.
You were given your first (post-op) feed “by mouth” today and threw it up. Accordingly, we shall take things slow as you will primarily be nourished through the feeding tube for the time being. As well, since Monday’s surgery you have maintained a fairly lethargic demeanor. All the same, Dr. Madsen feels these symptoms are not shunt related. It is the general consensus that you are now making an effort to adjust to all of the pressure having been relieved from the shunt – which is equally as strenuous when put side by side to your coping with the high cranial pressure (prior to the shunt’s installation). Presently, body positioning is the key as you accustom yourself to “normal pressure”. Regardless, Mommy thinks you look like Sleeping Beauty!
Mommy & Daddy’s next pressing action is to assemble a team meeting with both hospitals so we can systematize and coordinate the troops. Our awareness must be focused on sealing any potential cracks in the armor before your chemotherapy begins. “Gettin' good players is easy. Gettin' 'em to play together is the hard part” (Casey Stengel).
Sleep well tonight my little girl. On Angel’s Wing’s sweetheart – On Angel’s Wings!
I love you!
Dad
February 18Dear Sydni,
Aunt Carolyn picked up Tari at noon so I could be alone. “You have to allow a certain amount of time in which you are doing nothing in order to have things occur to you, to let your mind think” (Mortimer Adler).
Today I considered a few hours of solitude essential if only to reflect. It is imperative that I formulate an improved game plan for managing my time. I have been weighed down by, among other things, concern for you, Tari & your mother; a lack of sleep; maintaining the house; being by your side; researching your rare cancer; meeting with doctors; readjusting to curveballs; etc., etc., etc. In a time of tragedy I judge this unacceptable. Period! Others are far less fortunate. The remarkable support network surrounding this family has been a gift from above. Our Faith is unwavering. No, the common denominator must be my managing of time. “This time, like all times, is a very good one, if we but know what to do with it” (Ralph Waldo Emerson). So let it be written, so let it be done!
When I arrived for my visit, you were wide eyed and bushy tailed. I had not observed you so alert since Monday’s surgery. I cannot stumble on the words – just know at present I am smiling as I call to mind the joyous warmth when our eyes met. At that moment everything needed for complete peace and total happiness was before me.
It seems you have been quite irritable lately (and understandably so). Hence remaining calm during your feeds functions as a fundamental deterrent to reducing queasiness. Thus, when Nurse Rhonda administered your dinner feed this evening, for the next thirty minutes I massaged your temples just the way you like it whilst you took in your nourishment. Afterwards, Daddy gave you the full massage treatment which almost immediately put you to sleep.
The main gist for this week is that everyone agrees we should move backward in order to enhance opportunities for steps forward in a few days. Today you were given the day off from mouth feeding and your body was kept flat. The staff at Spaulding is not challenging you, instead opting to slowly reinstitute therapies. All future plans for PT are on hold as we do not want to introduce too much too soon. “La patience est amere, mais son fruit est doux” {Patience is bitter, but its fruit is sweet} (Phaedrus – Thrace of Macedonia).
On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
This morning began with a bit of a laugher, albeit at CJ’s expense. I awoke to find Barney (shrewdly it turns out) hiding under the kitchen table – and I would soon learn why. Upon entering the living room after that, there was your sister Tari matter-of-factly placing sticker upon sticker all over poor CJ’s body. Her excuse was she couldn’t find any paper.
Anyhow, (in a blink) morning abruptly turned to afternoon in this our Bizarro World of reality. Mommy, Tari & I attended the “Finding Nemo” Ice Show prior to visiting you at Spaulding Rehab. Your sister had tons of fun – her smile was genuine and laughs ever so pure; but I am finding it more and more difficult exhibiting simulated smiles of happiness when in public. “There is no greater sorrow than to recall in misery the time when we were happy” (Dante). I concede this is our reality and we cannot turn back the clock. Nevertheless, the void in my heart is amplified on every occasion connecting to family. Even more difficult today was watching Mommy bravely fight off the tears so your sister could enjoy an afternoon of normalcy. Our faith is resilient but our emptiness is very, very real. It was a wonderful afternoon for your sister; all the same I cannot lie – my heart was breaking during the entire show.
I was alone with you tonight as Mommy played with Tari in the family room. Nurse Teresa caught me up-to-speed on your day. It was pretty much status quo – your feeding is of the utmost concern. You did a good job holding down most of your food today – but you remain uncomfortable. X-rays showed your shunt is installed properly and blood work came back negative. So the question remains – what is making you so ill at ease? Until we know the answer, the game plan remains “slow and steady”.
I prayed over you for most of my stay – speaking concurrently with the Blessed Mother, St. Anthony, St. Jude, St. Gerard & St. Peregrine. All residual time was spent massaging your head as you slept. I dared not stop as the slightest pause would provoke a shouting glance my way. I got the message!
Eventually Tari would influence our departure. Bur first, your sister asked if she could kiss your hands as I overheard her tell Nurse Teresa “that’s my best friend Sydni”! Honey, I miss you. I am strong in Faith but I am so empty right now. Come back to me my angel – come back. “And I look again towards the sky as the raindrops mix with the tears I cry” (Unknown Author).
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
This morning Daddy wrote another chapter on “How Not To Train For A Marathon” as I completed my one-run-per-week workout. Today’s training run covered 14.2 miles through 20 degree temperatures and steady head winds. Ouch is a fitting word that comes to mind right now.
I visited for three hours today though you slept all the while. It was truly unfulfilling not being able to hold you. Mommy took advantage of the time by decorating the room as I sat by your side and took note of the realism. Without warning my five senses became surprisingly perceptible: the distinctive smell of your hospital room; the rhythmic sound of monitors beeping; the consuming sight of your complex bed; the rutted touch of your scars; the unpleasant taste of worry (evinced from my ever-so-dry mouth). My thoughts quickly segued to our daily lives: other than an occasional glance over, I have neither read a newspaper nor watched TV for five weeks; this morning I shared with Mommy how I now brush my teeth while showering to save time; vacations? A thing of the past; even dining out is no longer regarded as a luxury – sitting ten minutes on the couch waiting to exhale is more analogous to a comfort.
Then it struck me: what does it matter? As long as we’re happy - as long as we have one another, then does it really make a difference? Reality is merely an illusion. Some people live in a dream world - others face reality. But what if they were one in the same? “The real voyage of discovery consists of not in seeking new landscapes but in having new eyes” (Marcel Proust).
Upon leaving, the staff at Spaulding Rehab was conferring with Mommy as they introduced a multitude of theories respecting the root of your irritability. I pray that God eases your pain as you endure to live to tell the tale. “The will of God is never exactly what you expect it to be. It may seem to be much worse, but in the end it's going to be a lot better and a lot bigger” (Elisabeth Elliot). Be strong my angel!
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
I have felt the weight of the world upon my shoulders these past few days. The reasons are many and the explanations are few. But as the crack of dawn greeted my reflection this morning, the horizon was clear. In time, the tragedy within these piles of rock will eventually become my cathedral of strength. “Faith is to believe what you do not see; the reward of this faith is to see what you believe” (St. Augustine).
Today your rehab team has opted to address irritability and feeding concerns by going in the polar opposite direction. Rather than limiting your posture, it was decided you shall be fed in an upright pose. The theory being tested is that your reflux may have been caused from feeding in a lying down position. As well, the neurosurgeon suggested your limited range of motion may be due to insufficient cranial & neck exercising. To that end, my day was well spent as I held you in my arms for nearly three hours this afternoon. Our time together overlapped two feedings. Plus, every five minutes (over a two hour period) I exercised your head and neck – during which you did not resist once (occasionally you became cranky but would quickly calm down as I pressed my lips to your forehead and talked you through it). Any & all of my exhaustion due to a lack of sleep last night quickly frittered away. I simply needed to slow down and hold you. “There is more to life than increasing its speed” (Mohandas K. Gandhi).I am looking forward to Wednesday’s team meeting. It will be the first occasion at which the parties from Spaulding Rehab, NEMC/The Floating Hospital and Children’s Hospital will interact. Mommy and I will better understand the tentative game plan moving forward at that time. We are most interested in learning whether chemotherapy is even possible at this delicate stage of your recovery. In addition, my continuing research has potentially revealed two recent, correlating case studies in Japan and India involving what appears to be the successful treatment of an immature teratoma of the third ventricle. Needless to say I am loading the barrel with an overabundance of questions. Until then, stay the course and fight the fight sweetheart. “We shall draw from the heart of suffering itself the means of inspiration and survival” (Sir Winston Churchill). Sleep well Sydni!
On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
February 22Dear Sydni,
Amidst what we now call reality, today provided a rare glimpse of happier days gone by. Mommy came home last night and would stay with Tari until our return to Spaulding Rehab this afternoon; as such, our house became a home but for a passing moment in time. Your sister slept soundly, laughed cheerfully & played energetically. Upon arriving at the hospital, Tari was as proud as a peacock – telling anyone who would listen “this is my best friend Sydni”. Yes, the love of a family is one of life’s greatest blessings.
I so miss the Tari that I set eyes on today. Your sister is such a delightful and good natured child. My worry has been that, at some point, she might think badly of you with regard to the sudden disruption in her life. I was brought to tears this afternoon as I paid attention to Tari’s genuine love for her little sister. At one point – totally unprovoked – Tari reached out her hand and gently touched your head, uttering “I love you Sydni. Please get better soon. You come home”. It struck me that happiness is in the heart, not the circumstances. Tari simply needs the structure of a family unit again. As much as Mommy & I have been trying to reinforce our love to Tari, it is she who is pleading deep down inside to express her love towards us. “When we feel love and kindness toward others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace” (The Dalai Lama).
Your day (in my opinion) was excellent. You took your first feed (in quite some time) by mouth, held down all of your nourishment throughout the day (which was even more encouraging when factoring in your increased food volume) and your irritability periods seem to be fewer & farther between. When you do become agitated, you are more easily calmed as well. Other than a low sodium level which required IV fluids, you were a champ today.
My day ended as it began – through the eyes & innocence of a child. The occurrence came about when Daddy received a gift package from a longtime college friend that I haven’t seen in 15+ years. As much as the offering was greatly appreciated, my source of instantaneous pleasure arose when Tari jumped into the box and began playing with the Styrofoam popcorn. At one point, she even used the filling as cover for an impromptu game of hide-and-seek. “Unto the pure all things are pure” (Bible: Titus 1:15).
Today God opened my eyes to purity and innocence. He is putting our family to the test for a greater reason. As I search for answers, I shall accept our long struggle as part of the journey. “God is waiting to be put to the test by His people in prayer. He delights in being put to the test on His promises. It is His highest pleasure to answer prayer, to prove the reliability of His promises” (E. M. Bounds). Sleep well tonight my little girl.
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Reality is sometimes hard to swallow but, nevertheless, better served straight up. As such, your team meeting this afternoon presented sobering facts: (a) your doctors are deeply troubled on the subject of brain damage; (b) as you prepare to shock the world and defeat this rare cancer, the long term financial burden on our family shall be staggering; (c) your second brain surgery sent you back to square one vis-à-vis recovery moving forward; and (d) you will not be coming home anytime soon.
Ok, note to self: time to inhale and then exhale. Do again. Next, go back to the beginning.
Guess what my little girl – here is my take on the aforementioned: I am not interested in how many people say it cannot be done. It matters not how the comparable few worldwide have survived. Rather than focus on the can’t, why not the can? How is this for starters: (a) regarding brain damage, I believe the healthy parts of your brain can overcompensate for impaired areas by becoming skilled in supplementary responsibilities. If not, I can be your legs to walk, hands to eat and eyes to see; (b) as to the financial onus, this family can stay united through prayer, love and sacrifice; (c) another setback? You possess two intangibles that can defy any medical prognosis – a passionate spirit and an undefeatable will to live; and (d) stay as long as it takes – I can wait. I’m not going anywhere. “The question is not what you look at, but what you see” (Henry David Thoreau).
By the way, Dr. Kretschmar was called away on an emergency today; as a result, she was not in attendance at today’s team meeting. Therefore, we will discuss chemotherapy strategies on Friday while you undergo an MRI.
This evening I held Tari a bit tighter and hugged her a lot longer. We shared lots of laughs as your sister practiced dialing Nana & Papa’s phone number. Then before bed, we colored together as she talked a mile-a-minute. If Tari only knew the depth of strength my daughters give me - how so deeply I love you both. “Being deeply loved by someone gives you strength; loving someone deeply gives you courage” (Lao Tzu).
My night ended in deep reflection. For some reason, despite near freezing temperatures I was drawn to our roof deck at around midnight. As I gazed skyward, a full moon captured my awareness. At that moment I felt God was speaking to me. “God enters by a private door into each individual” (Ralph Waldo Emerson).
On Angel’s Wings sweetheart – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Upon entering your dimly lit room today, I was surprised to find you unaccompanied while sitting awkwardly in your jumper seat. I would soon learn that, because of your irritability and an earlier vomiting episode, the duty nurse struggled to find your comfort zone. This had been going on for approximately three hours (Mommy was at home this afternoon spending quality time with Tari). Quite frankly, it appears your nurse, as caring as she may be, simply ran out of ideas and, therefore, left you alone. Truth be told, the bond between a child and parent is that like no other. Within minutes of my arrival, I had you nestled in my arms, feeding effortlessly and, shortly thereafter, fast asleep. My point being: it was a disheartening experience because it reinforced the exigency that Mommy and/or I be by your side near 24/7 during this critical phase of recovery.
Our love is absolute thus the question begs: why would this be so upsetting? Because on the one hand – Tari is showing signs of acute emotional trauma and, in consequence, desperately needs a return (at the very least) to semi-normalcy. Then on the other hand, you necessitate the calming influence of Mommy & Daddy’s unremitting presence in order to gain strength for the greater challenge that lies ahead – i.e., aggressive chemotherapy. How do we balance the two? A wrong decision either way can have dire consequences. I am so drained from worry. “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference”.
My visit today was endearing. I pressed you as close to my heart as you would allow. And even though you slept, I spoke and sang in your ear throughout. When the time drew closer to leave, I could not muster the strength to let go. As a matter of fact, I can still feel you in my arms as I sit here and type. Nevertheless, at long last I placed you within your crib as I prayed to both The Blessed Mother and St. Anthony.
Sydni, I don’t know how this movie will end but I do know this - you are a gift that has been sent from above. “It is only when we truly know and understand that we have a limited time on earth and that we have no way of knowing when our time is up that we will begin to live each day to the fullest, as if it were the only one we had” (Elizabeth Kubler-Ross). As God is my witness, I will love this family like there is no tomorrow. In my daughter’s eyes, I have seen the light!
On Angel’s Wings my darling – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
Oh my child, you were nothing less than courageous today. What should have been a brief trip to NEMC (for a scheduled MRI) rapidly turned into a long-drawn-out all day affair. There was no blame to be placed; if anything, your magnetic shunt triggered all snags. Nonetheless, assigning fault is pointless because the end result was all the same: (i) your three hour appointment quickly segued into a twelve hour marathon; (ii) you were not allowed to eat beginning at 6:00AM – thus by midday dehydration set in; and (iii) your shunt had to be reprogrammed frequently – thereby resulting in numerous x-rays and back-and-forth shuttling between NEMC & Children’s Hospital. When I visited with you this evening you were out-and-out exhausted. What must you put up with next? Never mind – unfortunately I know the answer to that question. “It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks”(Helen Keller).
This evening I dined out with friends for the first time in seven weeks. You were the topic of conversation for most of the evening but it was therapeutic nonetheless. So many people are pulling for you Sydni. You have touched the hearts and, more significantly, the souls of countless lives. “All arrangements that are carried out between heaven and earth are carried out through angels” (Mirza Ghulam Ahmad). Indeed, God has sent forth an Angel.
On Angel’s Wings my child, On Angel’s Wings!
I love you!
Dad
Dear Sydni,
There are days when your development (good or bad) idles in neutral and today was one such day. My prime interest this afternoon was to ensure your comfort. As such, I gave you a rub down from head-to-toe. I so love the look on your face when I massage your scalp. Your head literally melted into the pillow with each gentle stroke. Occasionally you would offer a quick look of approval before returning to nirvana. I was at ease knowing you were resting comfortably upon my departure.
Then later in the day Mommy & I squabbled with gusto in an avoidable tête-à-tête. We are coping with the demands and burden of present circumstances in a different way; as such, at times the pressure and subsequent stress is unbearable. I decided to release my tension resultant from today’s disagreement by building a candy snowman and then watching the sunset. God’s work is truly great. “The more we love God the more we will obey. The more we obey the more we will be aware of the reality of Christ in our lives. The more we are aware of Christ in our lives, the more victory we will experience. The more victory we experience, the less difficult the choices are and the less conflict we have within ourselves” (Norma Becker).
Sleep well tonight my angel. May all your dreams come true!
On Angel’s Wings Sydni – On Angel’s Wings!
I love you!
Dad
Dear Sydni,
On this frigid Sunday morning, I once again set out on my weekly marathon training run. Today I covered 14.3 miles with the L Street Running Club. The wintry air was biting and the wind was blustery; nevertheless, it dawned on me at mile nine that I actually look forward to this once-per-week misery. Honestly, during the week it is my only therapy which prevents sanity from quickly spiraling into emotional breakdown. Thus you are not only my inspiration but also my source of strength.
This afternoon Tari & I visited for four hours. But before you and I could share quality alone time, your sister was bursting to sit upon my lap for a picture with her “best friend”. I pray for the day when you can come home – we all need you back soon. Anyhow, after the photo I held you in my arms the entire day. Our dear friend Mary Boike (who had slept by your side all evening as Mommy stayed home last night) tells us you had a very good night – notwithstanding a few minor spit-ups here and there. The key to your feeding seems to lie in your ability to stay calm. You were relaxed and peaceful during my stay; however I did note my arm being very sore resulting from your head sturdily arching into me from time to time. I am hopeful that, with enough rehab, this discomfort (which has been apparent since mid January) will fade away.
Mommy & I are still struggling to communicate resultant from yesterday’s dispute. "Two men in a burning house must not stop to argue” (African Proverb). I cannot put into words how unbearable this strain has been on your mother and me. I pray that the tragedy which has befallen you will not mushroom into a family disaster. I dare dream for how our life once was. “If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream” (Martin Luther King Jr.).On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad
February 28Dear Sydni,
Today I was comforted in witnessing such tender, motherly warmth from your Spaulding Rehab caregivers. You are so loved by your nurses. Upon my arrival, Mommy was preparing your sponge bath as Nurse Theresa gingerly placed you on top of the scale for your weigh-in (sorry to say, you lost some weight which is not optimal). Afterwards, as Mommy bathed you with warm washcloths, Tari lent a hand by lathering your shampoo. It made your sister feel so fulfilled being able to help out. She told Nurse Theresa "it’s called teamwork".
Next up was Speech Therapy which meant a bottle feed. I was ever so drawn to the gentleness with which your nurse cradled you in her arms. First she warmed you up with the pacifier. Your struggle was noticeable as it appears at times you do not know how to direct your tongue. Once you were coaxed into a rhythm, your bottle feeding began. And although you required persuasion, you fed near flawlessly. There was only one instance in which you became somewhat overwhelmed (i.e., when you sneezed). Other than that you ate and, as importantly, burped well.
Re last Friday’s MRI, this afternoon your mother and I conferred with Dr. Kretschmar. I can best summarize the talk as such:
- Dr. Kretschmar, a senior radiologist and Dr. Carl Heilman (NEMC’s chief neurologist) all reviewed the scan. Your right ventricle looks great; but the left ventricle remains quite enlarged and is, therefore, compressing the brain. The question thus begs – is an additional shunt necessary for the left ventricle?
- The general consensus at this point is – if you are stable, then it may be more prudent to sit on this for a couple of weeks. This may allow the blood more time to absorb into your body.
- Whereas blood still exists within your brain, the doctors cannot conclude with any certainty whether the left ventricle is enlarged resulting from the tumor growing back. It may simply be the remnants of the original clot.
- Right now, we need to identify the benefits of staying at Spaulding Rehab versus having you admitted to an acute care facility. This will be discussed and hopefully agreed on at Wednesday’s team meeting.
- Dr. Kretschmar wants to be confident that your other issues are resolving before the chemotherapy starts. Although she has treated children more sick than someone in your state, Dr. Kretschmar is hesitant to start chemo just yet. You are not stable and, accordingly, she does not want to risk your counts dropping.
- The installation of a G-tube is being considered. At some point focusing on the cancer must come first and your nutrition second. As such, using a lighter dosage of the chemo cocktail is under consideration.
- We then consulted with Dr. Madsen who quickly validated Dr. Kretschmar's conclusions. To that end, his feeling is that, as long as your fontanel is fine and no additional symptoms arise, then we should let things play out through the course of time. He does not want to operate again if he doesn’t have to.
- The bottom line: Wednesday’s team meeting will be a day of clarification.
The known facts are daunting but the unknown is what terrifies me. I cannot allow fear to gain power over me. Where fear disheartens, Faith will encourage. I will not permit fear to choose my destiny. Faith shall be my beacon of light. "Never fear shadows... they simply mean there's a light shining somewhere nearby" (Unknown Author).
I was moved today by one particular guest book entry on your website. It read: "You have no idea of how many people your little "messenger" has affected. I think of her as a "child of light." She is showing all of us the way and her reward will be a crown so bright, it will light up the world".
Sydni, I do believe you will light up the world! On Angel’s Wings my little girl – On Angel’s Wings!
I love you!
Dad