After 5 weeks in the hospital, Diego is finally home probably thanks to our HMO essentially cheaping things out. Kaiser sources out radiation therapy which brought us to UCSF in the first place and once Diego was out of danger they wanted to ship him back to our local Oakland hospital. The move out of PICU was actually quite hard on Diego and I was adamant that a big move at this stage would have a negative impact on his recovery. A move home, I asserted, would be best for him. He was doing well enough so I won out. I am quite certain that if Kaiser did not push for the move we would still be at UCSF now. The doctors were very clear on what the parameters would be for bringing him back to the hospital.We left UCSF at about 3:30pm and on the ride home Diego had already started to revert to his bubbly self by pointing out the sights: the streetcars, the buildings and traffic lights. It was so great to see. Last night he slept in his own bed, and while I did have to give him pain meds through the night, I felt that he did sleep quite well. Today was our first full day back home, and Mateo is over the moon having his big brother back. All day he was pointing to Diego and saying “DayDay” (his name for Diego). Diego hasn’t exactly made a complete turnaround, but showed improvements on all fronts. He is what I call “shellshocked” from his hospital experience. He is also very, very weak and having trouble walking. A month in bed and very little food will do that to you. I need to walk with him most of the time to make sure he keeps his balance. He is so, so skinny. While not eating a large amount of food today, he did eat all meals and many snacks today and far more than he had at the hospital. His pain is not 100% managed, but I think we will get there. My main concern is how chemo and radiation will impact his recovery, particularly dampening the appetite on an already skinny and malnourished boy. Chemo restarts next week.
We were finally sprung from PICU last night, Diego is finally doing well enough to go “back on the floor”. We were moved back up to 7 Long, which is the part of UCSF Children’s that is primarily devoted to pediatric cancer and hematology. We had enough wall space that I was able to start hanging up the cards that Diego’s preschool classmates made for him. In the morning, physical therapy came by to take him into the “gym” and work with him and assess his range of motion. He was essentially taken to a large room and given trains and some other toys to play with and encouraged to stand up as much as possible. He stood up for about 20 minutes without getting tired and the doctors felt this was encouraging. Without his chest tube and heart, respiratory and oxygen monitors he only is dragging around his IV fluids and has more freedom of movement. After the gym, Diego wanted to go to playroom and we spent close to an hour there before coming back to meet his Grandma Carol. He was tired, but wanted to go back to the playroom yet again. Once there he mostly seemed to want to sit, having played with some toys and rubber stamps earlier. I told him before that this was a safe place with no doctors. I’m not sure if it was that or whether it was that or his perception that this place was a little more “normal”, but he really want to stay there, even if not at play.Over the past few days he has become very needy with me. He wants me to snuggle tight, hold him, and does not want me to leave the room even for a moment. He is very anxious when the doctors and nurses come around. He has told me he is scared of the hospital. I think that now he is off the morphine and generally in less pain he is showing signs of what I can only call PTSD. I’ve tried to soothe him by reading him the book written by the Wilm’s survivor and talking about what is going on but it seems that he mostly wants to focus on anything but being here. Hopefully we will be going home by the weekend. His pain is being managed with oral medications and he is starting to get his appetite back. I ordered some spaghetti for myself last night, and he was begging me for it. Unfortunately the doctors did not clear him for solid foods yet (insert mother guilt here as I tried to discreetly scarf it down). Today he was cleared for solid foods and I fed him a few bites of spaghetti for dinner…baby steps. The doctors may start him up again on chemo this week, dependent on the surgeon’s input. I have mixed feelings about having him starting chemo again– on the one hand I want to give him a break and time to heal, on the other I want that cancer *out* for the best chance of recovery. I guess this is the same push and pull the oncologists and surgeons are going through.
Diego’s hair started coming out in clumps to we decided it was time to buzz it off. The doctors had told us that when his hair started coming out that the hospital would be able to “do something about it”. We took it that they meant someone would come and cut his hair for us but when the time came down to it, they just handed us the clippers. In retrospect I wish I would have asked for some scissors to attempt something that was more mid-way, but here we are. In any case, Diego is now much more comfortable and that is all that really counts. The hair was making him itch and it was really disturbing to him to see it coming out in his little hands.Otherwise, we feel he is healing well from the surgery. On Saturday he took a few steps which was really hard for him. He has hardly gotten out of bed or eaten in the entire month, so he is very weak. Watching him struggle to take steps made me realize, yet again, that he has a long way to go before we can come home. But he is taking steps every day, and they did manage to take him off the morphine quite quickly. And, just today he is also off the oxygen and stomach suction. I think they are now waiting to take the chest tube out, the tube which is pulling excess fluids out of his abdomen. Once the chest tube is out, it can’t be long before we are out of PICU. Last night while he and I were looking at the Dale Chihuly picture book, Diego graced me with a smile and even a little giggle. It had been about two weeks since I’ve seen that side of him. We talked about all the pictures and he gave me descriptions of the artwork. (The squiggly ones were his favorites, in case you were wondering.) So nice to see my little boy coming back little by little– I’ve missed him so much.
Diego is continuing to heal well from the surgery. On doctor’s orders, we got him out of bed to sit in a chair a couple of times today and he also enjoyed a long period of wakefulness and some play time. He was looking much less sallow than yesterday too.He is having additional side effects from the chemotherapy. He is getting sores in his mouth and his golden locks are starting to come out at a rapid rate. I’ve been holding out hope that Diego will be out of here next weekend with his hair mostly intact and we’ll have that family portrait that we had been planning before he got sick. But I’m not sure if his hair going to make it– We may need to have him get a buzz cut here in the hospital. Today I thought it was a good time to read him a book written by a Wilms Tumor survivor, aged 9, that walks through the story of diagnosis and treatment. I’ve only talked with Diego in the most general terms but I’ve realized that he needs to get a better idea of what is going on. Time to add the words tumor, cancer, chemotherapy and radiation to his vocabulary. To see the little boy in the book going through exactly what Diego is going through was very helpful for him. Earlier on, I read him a book called “My Central Line” that told the story of a little girl who had a Broviac tube. Diego listened intently and had me read it to him twice straight through. It’s really nice to have these tools. The child life specialists, as they are called, also like to use stuffed animals to demonstrate medical procedures and encourage play acting but it hasn’t really been Diego’s thing. He seems to process things better through books and stories. We are still in PICU, but finally got a window tonight. It’s up to the surgeons on when he will get to leave. They are being very cautious with him, even one of the PICU residents seemed to feel so. Two major surgeries in 3 weeks and a weakened body from chemo and radiation would seem to warrant that kind of caution I suppose. Today I also asked one of the surgical residents why Diego is still in PICU since he seems to be doing better. She said that the main factor is the amount of morphine he is receiving. It is a high dose, even for an adult and that requires very close monitoring. Apparently he has developed a tolerance over time. The doctors did take him down on the drip today from 1.8 ml an hour to 1.35 ml an hour. He gets additional boosts of .8 ml morphine as needed or every 2 hours. I think they can move down further tomorrow too. I asked again for an estimate on when homecoming might be and the resident felt it may be in another week or two. But I’m still optimistic that Diego will make an even speedier recovery. Now that we have a room with some natural light we can begin to restore more of a routine and that and the sunlight should help make him stronger. Seeing his Daddy and Mateo tomorrow should also really brighten his spirits.
By my calendar, about one month ago this journey began for us. Diego is healing well, and it feels like a homecoming is within sight. But with months of chemo and radiation ahead of us, I know this journey is far from over.We’ve been in PICU a week now, still in a room with no natural light. Days are starting to meld together. Since we moved in I have been pressing for a room with windows and I’d hoped that we might get our wish tonight, but we were again told that someone else with more urgency needs the room. When we finally get it, I think a room with natural light will help tremendously with healing and restoring Diego’s natural rhythms. It’s the surgeon’s decision on when we go back to the “floor”. I’m not clear on exactly what they need to see for them to give the okay. There is definitely a difference with Diego post surgery. Physically, it is obvious, as his belly is no longer bulging and distended. He is still in pain, but he seems weakened. Now that his pain is finally managed, I think his body is giving in to exhaustion. He has been through a lot in these past 4 weeks, and he has hardly eaten. He looks like a Kathe Kollwitz drawing- big sunken eyes and skinny limbs. He has been getting IV nutrition and fluids, but that is certainly not enough to keep him strong. He has not been allowed anything by mouth since Friday at midnight, and we are still awaiting the surgeons ok for fluids. This was major surgery, so they need to make sure that his bowels are working again before they give the okay for anything by mouth. But, he has more strength than yesterday and his voice is stronger. We had about an hour and a half of reading, coloring and puzzles in bed. And that was a big improvement over the past few weeks.
By now, we’re definitely starting to feel like a fixture here and the staff is getting much more familiar with us. There is that knowing nod I get in the hallway when I walk by staff who know Diego. I’ve also been really touched at all of the doctors who have come by just to follow Diego’s progress and other staff who have stopped to tell me that they had been thinking of him ever since he came in. We tend to think of hospitals as the faceless corporations but they are made up of some really caring people.And now that the surgery is behind us and our nights have been quieter I’m finally starting to get a little more sleep. I slept until 12:30 today. Not uninterrupted sleep, mind you, but just laying in the cot that long felt really, really good– a little respite.
One of the oncologists came in this morning and called Diego a “rockstar”. It probably made my day. Apparently he had done so well in the surgery and looked so good, that everyone has been talking about him. The team here is elated at how well he is doing. I feel good, but to be honest, until he starts acting like more of himself it’s hard to feel more than just a sigh of relief. He still has months of chemo to go once we get out of here.We are still in PICU in an interior room with no natural light. I had asked that he be transferred to a room with a window but when surgery became imminent and there was no time to move. The nurse told me that he will probably be transferred back to the floor tomorrow, which is great news. Pain management seems to be what is keeping him here. Morphine seems to be his drug of choice, while they have tried a number of other alternatives nothing has worked as well. He will have to be weaned off it in order for us to go home. But with the tumor out, I would imagine he will only start feeling better from here on out. The surgeon came in late last night and talked to Erich and I about the surgery. Before surgery he had discussed the possibility of Diego losing some organs other than the bad kidney and worse. The tumor, once removed, was “mushy” and more prone to bleed. And that it probably wasn’t the biopsy or radiation that caused the bleed, it was probably just the biology of the tumor. The tumor, he said, was about the size of a football. Originally I’m remembering that it had been closer to half that size three and a half weeks ago when first diagnosed. The doctors really feel that the bleeding caused the stretching and enlargement. An additional pathology report will be done to determine that it is still in line with the original. Despite my concern over a misdiagnosis, the doctors feel that there is only a very small chance that the pathology report will be any different. The surgeon did a second, larger incision that enabled him to go under the diaphragm to access the tumor. Diego will essentially have a big “F” shaped scar on his chest and abdomen when he heals. Diego is sleeping quietly now, finally. It was another really rough night last night. Because he has been on so much pain medication for the past three weeks the anesthesiologist found it challenging to properly sedate him. He was overly awake after surgery. He had a breathing tube in and about 4 different IVs not including the central line in his chest. It was a really horrible sight for a parent to see, with him restrained and struggling to get out. Initially we were just so happy to see him again, but throughout the night the repeated wakings made it quite traumatic. He and I have had a lot of traumatic nights at the hospital with procedures done in the wee hours. I joked with my sister today that being abducted by aliens and being probed repeatedly is just your average night in the hospital. I’ve tried to go with him as much as possible to comfort him but I’ve started to worry about him resenting me for letting people put him through all of this. I asked our nurse if he would remember any of this by the time he was a teenager and she told me probably not because of the sedation. I joked that by the time he is 16 he will, no doubt, hate me for other reasons.
Thanks everyone for the good vibe mobilization– we just heard from the OR that surgery went really well and the tumor is OUT! As far as we understand he did not have any of the complications they were concerned about. We’ll be seeing our little one shortly to give him big kisses. His recovery will be more challenging than before, but we feel we can breathe a sigh of relief.
The doctors have agreed that it’s time for surgery. Diego has held steady with his hemocrit and hemoglobin, but has been having increasing problems with breathing. They have the best team together and will have two surgeons doing the work. The surgery should take 4-6 hours, and they’ll be taking him down around 10:30 this morning. Please mobilize your good vibes.