On December 24, 2011 David and I received the greatest gift, Mr. Max. Referring to our newborn as a gift is cheesy, especially because he was born on Christmas Eve, and inaccurate, because gifts are typically not accompanied by bills, but his presence is undeniably the most wonderful thing that has ever happened to us.
Rewind 20 weeks prior to August. David and I went to the doctor for the ultrasound, where parents usually find out the important stuff about their baby like, "is it a boy or girl?". I (and David by default) did not want to know; I wanted it to be a surprise. But we did receive a surprise that day; we learned that our baby would be born with a cleft lip and cleft palate. Basically our baby was missing part of his or her mouth and roof of mouth (which would mean the baby could not suck...makes it tough to drink a bottle).
Although shocked, we were fortunate to find out about this before Max was born. This enabled us to research doctors in our area. After meeting with the doctor and nurse at Johns Hopkins in Baltimore we decided to go with them. Their team is not only highly regarded, experienced and successful, but they made David and I feel more comfortable then we could have imagined.
Max's medical timeline
- March 27, 2012 - Max's first surgery: a lip adhesion, took less than an hour! Overall I would say that it went well, but there were a few tough aspects:
- David could not come with Max and I because he had to take chemo treatments that whole week.
- Max could not eat from midnight until the surgery at 7:00am. Try starving a three-month old for seven hours. He can barely wait the 15 seconds it takes to heat his bottles.
- Max had to wear rigid arm braces (no-nos) for two weeks following surgery to prevent him from touching his face. Anyone with a baby knows this is a nightmare. I wouldn't enjoy wearing a virtual straight jacket for two weeks either.
- August 23, 2012 - Max's lip repair was rescheduled (from July 5) and will last about two hours. The doctor will open up his closed lip and reshape the lip and nose to be symmetrical. (a.k.a.- baby's first nose job)
- October 23, 2012 - Max's final surgery of the year will be his most significant. This will be his palate repair, after which the roof of his mouth will be complete and my little nugget will be able to suck and eat normally.
- Sometime in the future...Max will have a graft to take bone from his hip and put it in his gum to help his adult teeth come in.
Click here for medical information about cleft lip and cleft palate
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| Day before Max's lip adhesion (3.26.12) |
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| Minutes after lip adhesion surgery (3.27.12) |
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| Max and mommy bunking in his hospital crib (3.27.12) |
DAVID (the daddy)
On January 31, 2012, when Max was about five weeks old, our lives changed more. Our energetic newborn kicked and screamed with the best of them. Naturally when David had some pains below the belt he just assumed that Max kicked him and the pain was just a nice little reminder. But, as I have since heard from many males, when you have pain in certain areas of the body you get it checked out. After some late-night Googling of possible causes of man-parts pain (and of course many supportive comments by me, such as, "shut up, you don't have cancer"), David went to the doctor. One semi-awkward check-up later, a urologist told David that he had an infection and gave him antibiotics. He also told him to get an ultrasound as a precaution. Despite a busy basketball schedule, David got the test but never heard back from the doctor.
I decided to call myself just to put my mind at ease. David had signed a release for the doctor to speak to me about him. Who would have thought that document would not only mean I would be the first one to find out about David's cancer, but that I would have to be the one to tell him. It was 5:00pm when the doctor phoned me and said that David's ultrasound revealed that he had testicular cancer and that it was imperative for him to have surgery the next morning. He said not to let him eat or drink anything after midnight and to come to his office first thing the next morning.
Immediate problems with the situation:
1. Max was hysterically crying. He did this all the time (much less now thank goodness!), but it seemed to escalate exponentially while I was on the phone with the doctor.
2. How do you tell your husband (or anyone!) that they have cancer?
3. When was I going to tell David? He had a game that night. I was planning on taking Max, but I was not planning on this. That was a fun game to sit through. At least they won.
4. I didn't even know this doctor from a hole in the wall, and all the sudden he would be removing one of my husband's testicles?!
David handled the news ridiculously well. Much better than myself (and Max). Although when his reaction included, "at least I don't have to get a ball removed" and I said, "actually you do," it was a little rough. However in true David fashion he immediately rebutted with, "I would trade a testicle for a win any day" (in reference to his team's first district win of the season earlier that night). Two seconds later he was on the phone with his players and coaches strategizing about the rest of the season. In fact, he told them he would only miss one practice and would be able to coach the next game three days later. For any ladies out there who have had a c-section, we were told David's recovery would be similar, if not a little more difficult than that. And it was.
Despite the excruciating pain of having his abdomen sliced into, David's focus was back on basketball minutes after the anesthesia wore off. Groggy in the recovery area, he must have asked me a million times to take him to practice on the way home. The next day, he went to practice in a wheel chair. And that Friday he coached the game, just like he said he would.
A few days after David's surgery the urologist said he was cured. The pathology reports made it seem like the cancer had not spread; the surgery removed it all. The doctor told us it was a waste of time to see an oncologist all the way at Georgetown.
Two weeks later David's CT showed an enlarged lymph node in his abdomen. Despite the urologists commentary, we did see an oncologist at Georgetown. She said that the lymph node may be enlarged as a result of surgery (like when your nodes become enlarged when you have a sore throat). She ordered weekly blood tests to track David's tumor markers.
Four weeks after surgery the tumor markers were normal. Last stop: follow-up CT to confirm that the cancer was indeed gone. The results were not what we expected to hear. Not only had the lymph node in his abdomen grown, but the CT also picked up a mass in his lung. David instantly went from having been "cured" of stage 1 cancer to being diagnosed with stage 3 cancer, requiring immediate chemotherapy.
There is no reason to re-hash the chemo experience, so here are the highlights:
1. It was terrible and traumatic. Unbearably rough on the body and the mind. A necessary evil that David endured and persevered through.
2. The nurses at the outpatient infusion center at Georgetown are the most amazing nurses in the world. That should hold some clout seeing as that our family has encountered dozens upon dozens of nurses through our many medical adventures.
After nine weeks of chemo David had another CT. His lymph node and lung mass had shrunk, but were not completely gone. This would likely mean that he would require surgery to remove these remnants. The doctor said that these masses might continue to shrink over the next few weeks since David still had the chemo drugs in his system.
This mediocre attempt to make a long story short ends with David needing surgery to remove the enlarged lymph node in his abdomen and mass in his lung. Both are small, but need to come out. His oncologist recommended that he have the surgery on his abdomen at Sloan Kettering Hospital in New York City. So he is. David will have a Retroperitoneal lymph node dissection (RLND) on June 27. Check the link below if you want to know more about the scientific, medical information, but here are the basic facts as they effect David and our family:
1. The surgery is approximately 4.5 hours
2. David will be in the hospital between 5 to 7 days
3. David, Max, and I will be in New York indefinitely until David feels strong enough to come home (and be comfortable in the car). We are guessing this will be between two to three weeks.
4. Full recovery can be expected after four to six weeks
5. David can't eat any fat for two weeks after he leaves the hospital. And he can't eat any nuts or corn for a year!
