The blur continues - Shavuot with the Family

We decided that it would be best if we all spent the Yom Tov together, so Jeff and Justin stayed in a bikur cholim apartment 5 blocks from the hospital and I stayed with Anny.  Between Chai Lifeline, Bikur Cholim and Satmar, we had enough food for the next year!.

Chai lifeline provided us with beautiful place mats and we set the table for every meal.  Two family members to a "tray table."

Additionally, we were given the yummy blintz muffins, that I usually make for Anny. These were brought on Friday by my sister in law from Long Island (as if she had nothing else to do erev yom tov!)  And, we were given, not a small cup of ice cream like I requested, but a tub of ice cream, sprinkles, whipped cream, chocoalte sauce, cherries and a scooper from Chai Lifeline.  We treated the doctors and nurses on the floor to a Shavuot ice cream party in Fair Lawn style!

The toughest day for us was Monday - day of the surgery.  Anny left the room at 8:30am and didn't return until almost 5pm.  She was quite uncomfortable at first, but once she found her comfy spot relaxed.  Her only real concern was that she only prayed a little bit that day and missed most of the prayers.  Jeff assured her that it was ok.

We were very happy to see that Anny had not lost any of her spirituality during surgery and were glad to find out in the next days that she maintained her intelligence and sparkling personality.

As Anny says, after learning from her teacher, Baruch Hashem Yom Yom (Blessed is God, every day!)

The backstory - or the beginning of this new adventure

On April 22 Anny had what appeared to be a first migraine headache that kept her out of school the next day.  She went back to school on tuesday but her teachers told me that she spent most of the day with her head on her desk.  I took her to the pediatrician that night and she had a basic exam.  The dr noticd that her pupils were dilated unevenly and suggested that I follow up with a neurologist.  Since Anny did not have one at the present time I set out to find a dr who worked with the visually impaired. I did and made an appt for may 31st (today, ironically).  She did not feel great for the rest of the week but she was able to go to school every day.  The headaches was totally gone by weeks end and our lives went back to the way they were except that Anny was tired aloha and her teachers said that she was not participating as much. 

Flash forward to two weeks ago when the woman from the commission for the blind who is teaching Anny to read Braille noticed that her pupils were unusually dilated.  I made an appt with the ophthalmologist and she was seen the next day.  The dr said that the issue with the pupils was symptomatic of her visual condition but noticed a decline in her vision.  We had been to the lighthouse for the blind for a low vision checkup the month before and there was no decline noted so I waited for the report from the ophthalmologist to have the two drs speak to each other and reconcile the different results.

We received a call last Monday eve from the ophthalmologist saying that he was working on her report and he realized that the incredible decline in vision was not supposed to happen with her diagnosis.  Her vision went from 20/800 to 20/2400.  He asked us to get an MRI.  At that point I emailed the neurologists office and we moved the appointment to the next day.  She was seen on Tuesday and this dr agreed that she needed an MRI as well. It was scheduled for july 24th.  The first appt thant was available in the hospital he knew that could do one with sedation.  We were told that he would work on getting it earlier but there was no urgency other than getting an answer to the prior months headache and the vision issue before camp began.

On wed she went to school and I got a call that she had a headache and that she was nauseous.  I picked her up and her shadow told me that she was a bit disoriented during the day and was dizzy.  She was quite pale when I picked her up.  On the way home she got her color back and seemed to be feeling better.  We had a discussion about whether to go to 7-11 for free slurpees day or if she should take a nap and then go later.  She opted for the nap. When she woke up one hour later she said that she felt much better and that the headache was gone.  I emailed the neurologist again and asked if the symptoms of her headache were normal.  The receptionist got back to me and said that the dr we had seen the day prior was out of town but that she would get me another dr.  At 9pm we received a return call and whe. I spoke to the dr we discussed that this it be hormonal - she had gotten her period approx 3-4 days after the first headache and here we were one month later and she has a headache again.  The dr said it could be hormonal, it could be migraine but to be sure we should get a cat scan.

I took her to the local er and was told by the er dr that there were some abnormalities on the first reading but that he was waiting for the radiologist to give the final results.  At 2 am the dr calls me to his cubicle and showed me the scan. He started talking about masses, and excess fluid and enlarged ventricles, that he was talking to a neurosurgeon and that we should be transported to Columbia pres in new york.  I was caught unaware and have a good friend who is a pediatric oncology nurse and I called her to speak with the dr and explain to me what the hell was going on.

She explained briefly and told me that the neurosurgeon was tops and also had a great bedside manner.  At 5am one week ago we won't by ambulance to new York.  The neurosurgeon spoke with me and said that there was a large mass on her frontal lobe that was blocking the flow of fluid in her brain and the first step was to put in a temporary drain to relieve the pressure.  That was done last Thursday .  Her diagnosis was that she had a lime size tumor on the left side of her brain that could be safely removed. That was done on Monday in a very long surgery. That tumor is now gone.  There is another mass on the right side of her brain that is inoperable and once she has recovered from this surgery we will need to meet with the oncologist to discuss removal/shrinkage options.  And so the hell continues. She is recovering beautifully and we hope to be home by Friday but first they need to remove the drain so we live day by day.

The blur of days at Columbia Children's Hospital

Thursday 5am we arrived at our new "home" for the next week.  Pediatric ICU at Columbia.  Anny had a drain put in her head to relieve some of the pressure within a few hours of arrival at the hospital.  While it was less than beautiful to look at, it really didn't seem to bother Anny at all and she was in her usual spiritual chipper mood for the next few days.

We had some moments where she realized what was actually going on and I tried to explain to her in ways that she could understand every step of the way.  The best was the "stuffed toilet bowl."  I explained that the drain was similar to unclogging the toilet when it gets stuffed, but that the drs. still did not know what was clogging it.  They were going to have to do surgery to find out what the clog was.

Anny was also concerned as the three main people her school had been doing tehillim for this past year had all passed away, including a sister of a classmate who had passed away from something to do with her brain.  Anny didn't know specifics, other than that.  She became afraid at times (usually between 4 and 5am when we were awakened for some visit or other.)  We had some very deep conversations at those hours and Anny seemed to understand and believe that Hashem (God) would help her out.  She mainly concentrated on praying for a little boy from our synagogue who was across town receiving life saving stem cells.

My sister in law explained to me that when you really want something badly, pray for someone else's needs and hopefully you will get what you wished for.  I told Anny that, and she was quite relieved.